Surfacing After Silence

Life. After.

“You’re Part of the Team!”

copyright Krames Patient Education

This paragraph is courtesy of a cheesy little pamphlet called “Post-Op Pain Management: You’re Part of the Team.”  Tomorrow I am headed off to the hospital for orthoscopic knee surgery.  Same day, outpatient, so I won’t have the opportunity to mimic all of the corny drawings of the patients in the illustrations that describe a hospital stay.

I was reading over my pamphlet like a good patient, though, and this paragraph stuck out, specifically the phrase “only you know how you really feel.”

I remember one eating disorder unit on which the doctor is notorious for writing or typing during your individual sessions.  This infuriated some patients because “How am I supposed to know if he’s listening?” My answer to them was, “Ask.”  By that time in my treatment, I had no problems speaking up and asking questions and making sure the doctor heard my concerns.  This was because I had also experienced an eating disorder unit in which the patient had virtually no say in anything, from meal plans to activities to groups to individual therapy.  I sat in the day room all day long, not speaking to anyone, because staff made it very clear that they were not there to talk to us, only watch us eat.  I can’t even remember my doctor’s name or face, that’s the amount of time I spent with him.  He made no lasting impression, other than the fact that I remember he was male.

By the time I was hospitalized in 2005, I made sure my treatment team knew how I was feeling.  I asked questions, I interrupted their dismissals to say, “I have something I want to talk about,” and I had an ongoing dialogue with my treatment providers.  I cannot stress what a difference this made in my treatment.  So many other patients walked out of the doctors’ offices frustrated and angry but then would admit that they didn’t say anything.  “You didn’t say anything?” I would ask.  “Nope.  Why should I?” was a common response.

The reason why you should speak up is because no two patients are alike.  No two people develop an eating disorder for the same exact set of reasons and no two people recover in exactly the same manner.  We each experience the hell and pain of an eating disorder differently.  Yes, there are many commonalities among symptom groups and behaviors and triggers, but how each of these affect us as individuals varies from person to person.  And the doctor cannot address those unique concerns if you do not tell him or her what they are.  They are not mind-readers, however much we would like them to be.  They only have as much information as you give them.  And the more information they have, the more effectively they can help you.

I realize that being assertive is difficult for a lot of people with eating disorders.  But if you approach a session with the attitude of “why say anything?”, you can’t really complain that “he didn’t hear me.”  Of all the members of your treatment team, YOU are the most important one.  Yes, YOU.  Not the MDs, not the PhDs and not the techs or nutritionists.  They all have knowledge and experience and skill, but all of that is nothing if YOU are not an active part of your own treatment.

This does not mean dictating your treatment.  I’ve tried that: telling doctors what I will and will not do without listening to their suggestions.  This has never helped.  This does not mean slamming doors and screaming at your doctor; although s/he will certainly understand that you are angry, chances are you are not clearly communicating why you are angry, especially if you just slam a door and walk out.

This means having conversations with your treatment providers.  Telling them how you are feeling and how you are reacting to various aspects of treatments.  Tell them your fears, tell them your concerns, and ask questions.  And be willing to listen in response.  You’d be amazed at the amount of negotiation that can happen when you honestly and appropriately express yourself.  Trust me, it beats playing manipulative games and showing your doctor how you feel by engaging in symptoms.

This will mean you will need to be assertive, or, quite possibly, learn to be assertive.  One of the first ways I began effectively expressing myself with my treatment team was through writing.  I wrote down how I was feeling and I wrote down my fears and questions.  Then I handed that sheet of paper to the doctor or therapist.  I did that only two months ago with my current therapist because I was afraid I wasn’t going to get everything out if I spoke it.  I was afraid I’d forget something.  So I emailed him a copy of the letter and we had common ground to start with at our next session.  I’ve gone into doctor’s appointments with lists before.  Bulleted points of what I need to tell them and what I need to ask.  I do this with both medical and mental health professionals.  And I’ve had several doctors tell me they appreciate it because then I don’t have to call the office the next day with an, “I forgot to ask about . . .”

And, how fitting that I am writing this entry now.  My orthopedic doctor’s nurse practicioner just called to say that the head anesthesiologist does not feel comfortable doing my surgery in the orthopedic clinic because of my heart and the slim risk of me needing to be shocked during surgery.  So I need to have my surgery done in the main OR, which means I have to first see that surgeon and wait for that anesthesiologist to clear me.  It was tempting to say, “okay” and hang up the phone.  Tears were streaming down my face and I was having a difficult time speaking.  But I had two things that I thought were very important to get across: the fact that I’m averaging about three solid hours of sleep a night because of my knee and the fact that the pain gets worse on a daily basis.  I was embarrassed by my shaky voice, and apologized for it, but the nurse said not to be sorry, that I should be upset and that she’s sorry this is happening.  But she is going to talk to the doctor and tell him what is going on with my sleep and pain and will get back to me later.  It really would have been easier to not say anything and hang up the phone and let myself cry as loud as I wanted.  But by voicing my concerns, my doctor has more information about me, the patient, the one experiencing the pain.

Physical pain, emotional pain.  Either way, the doctors cannot fully help you unless they know what you are feeling.  Everyone on an eating disorder unit has an eating disorder, but each individual is feeling and thinking in their own unique, individual way.  Let the doctor know you, for you are the key to your treatment.

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June 30, 2010 Posted by | Communication, Eating Disorders, feelings, recovery, relationships, therapy | , , , , , , , , , , , | 1 Comment

wandering around faith

my prayer beads

So this may not be my most focused post, but it’s a topic that has been on my mind a lot lately: faith.  Or spirituality in general.  I struggle to answer people when they ask what religion I am, because my faith really doesn’t have much to do with religion.  I suppose my faith is based on the Christian faith, and I use a Christian devotional and Bible.  But my God is not limited to the Christian faith.  My God is God.  Present in all things and people.  And because people are different, we connect with God in our own unique ways.  For some, that is through the Christian Church, for some it is through Judaism, for some, Buddhism, and we could go on.  My God is bigger than those worldly divisions.  My sister-in-law is Muslim, but I see no difference between “her” God and “my” God.  We simply express our faiths differently.

So when a Jewish friend included these prayer beads in my birthday package, there was no hesitation as I reached for them and warmed them in my hands, allowing my fingers to become familiar with the different shaped beads.  Her sister made these on a trip to Israel, praying with them in front of the Wall.  I have since carried them to doctors’ appointments and therapy and will have them with me during my surgery on Thursday.  I used to have a set of meditation beads, which broke a few months ago.  These beads seem like a natural replacement.

As I let myself slip the beads through my fingers, I become focused and grounded, able to concentrate on the divine presence in my life.  I am better able to connect with that presence.

One of the things that suffered the most when I was anorexic was my faith.  I may have gone to church during that time or read my Bible, but I honestly don’t think I had faith. I didn’t not believe, but I didn’t really believe, if that makes any sense.  I believed in nothing as much as I believed in the number on my scale.  Nothing else was as sure as that number.  Nothing was as tangible.

And nothing defined my identity, my self-worth, my mood, my entire being better than that number.  Which, now that I look back on it, is quite sad.  We throw the phrase around “You are more than a number” all the time, but how many of us stop to really think about it?  Do you believe it?  Can you list things that define you other than the number?  Do you really believe in those things on that list or were they just written down for some therapy assignment?  (I had a list of thing that define me long before I believed a single thing on that list.  But it made my therapist happy at the time.)

Recovery is not an end.  It is a beginning.  For me, among other things, it was the beginning of a path of self-discovery that I am still on today.  And, hopefully, will always be on.  I think I stopped walking on this path when I had my eating disorder, and I stopped growing and became stagnant and still.  Now that I am back on that path of self-discovery, I realize the importance of continuing that journey, the importance of growth and change.  It’s part of what makes us human.

And recently, my faith has become the focus of my self-discovery.  Renewing my faith, renewing an overall sense of spirituality, renewing my connection with the Divine.  And quite honestly, that renewal started when I was at Rader.  Although I was resistant to the program’s 12 Step foundation at first, I am ever thankful for a snow storm that gave me nothing to do but my homework assignment for therapy.  I began thinking about my faith and what it meant, something I hadn’t done in a long time.  I’d returned to this general sense of belief since I began recovery, but hadn’t really examined it in detail.  But the homework questions required I do so.  I struggled with some of them, but found that I looked forward to the evening hours when I could sit down with these questions and journal, for it is through writing I come to understand most things.

I’ve continued with this examination of my faith, rediscovering some of my favorite spiritual authors.  Why did I ever put these books and these writings away and turn toward a scale made out of plastic and metal?  That is probably a question that will never be answered, but I can answer the question: “Why did I turn away from the scale and go back to my faith?”  That answer is easy: that chunk of plastic and metal only left me feeling hollow and empty.  My faith has filled that hole, for I am filled with an awareness of the divine presence in my life.  That presence never left; I just stopped listening.  And I believe that presence is there for everyone who is willing to stop and listen.

So I challenge you, no matter where you are in your eating disorder, no matter where you are in your faith, to pause and listen and accept what is yours, in whatever form you find most accessible.

June 28, 2010 Posted by | Eating Disorders, faith, recovery | , , , , , , , , , | 2 Comments

My Own Moment of Choice

Me and My Little Namesake Boy (Alex, my nephew). He was a little under 5 pounds here, 2004

So before I shut my hellspri . . . er, formspring down, I had several people ask me about my “AHA moment”~ the moment I decided to get better.  This picture to the right probably played the biggest part in my decision.  Or, the person I am holding, rather.

I’ve known for years and years that I didn’t want to be a mother.  And people usually respond in one of two ways: A) Oh, you’ll change your mind when you get older.  (Um, I’m 33 now.  Still haven’t changed my mind.) or B) You don’t like kids??  Actually, I love kids and most of my jobs have involved working with kids.  I just don’t want one of my own.

I was looking forward to my brother and sister-in-law having kids.  I’d heard about how you get to spoil nieces and nephews and then send them home to their parents.  Sort of like being a grandparent, only I get to be cooler.  What I did not expect was the depth of emotion I felt for this tiny little baby all wrapped up tight in an incubator.  And the first time I held him, his little hands reached up and grabbed a fierce little hold of my heart and they have never let go.

This was 2004.  In 2005, I went through a rather drama-filled couple of weeks involving ambulances and ERs and I went inpatient, not fully by choice.  Once I was there, I had a rough time with the mandatory reporting procedure and got off to rather a rocky start. But I was getting closer and closer to the “I want out of this!” feeling.  The anorexia had completely worn me out and I was starting to see how it was ruining just about everything in my life. I was still IP on Christmas, and my brother brought Alex to visit me.  I loved seeing that boy.

One of my close friends on the unit taught my nephew to say “peace out” (He had just started talking and had just started calling me Ameh Lexie) and give the peace sign, although he held up three fingers rather than two because of the whole coordination thing.  And he tried sticked his animal crackers under the art room door, and I had to get staff to unlock it so we could pick them up because I didn’t want someone to get in trouble for hiding their evening snack later.  All in all, Alex made me laugh and smile and he made a lot of other girls laugh and smile, too.

But something was nagging at the back of my thoughts all the time he was there.  And after they left and I was journaling, I figured out what it was: I did not want my nephew to remember that day.  I didn’t want him remembering me in a hospital. I didn’t want him growing up visiting me in other hospitals.  I wanted to A) be alive to watch this miracle grow and B) be alive enough to be part of his life, an active part.  I didn’t want to be “the sick aunt” even if he never said those words aloud.

That was my big “AHA Moment.”  It didn’t make the work I was doing any easier.  I was still terrified of life without anorexia.  I had no idea what I’d find.  Who I’d find.  Would I like me without anorexia?  How would I be a good student without anorexia?  How would I protect myself without the eating disorder as a shield between me and the world?  Was I strong enough to do this?

Recovery began that day Alex came to visit me in the hospital.  And I made a huge amount of progress and was discharged into their partial program and worked my ass off and went back to school.  And some days I only had a finger’s hold on recovery, but I kept going.  And then, I’ll be honest, the thought of me not having anorexia freaked me the hell out.  And so I relapsed.  And then realized that everything was falling apart because of the relapse.  So I went back to the hospital.  And I told my doctor that I would stay as long as HE wanted me to and I would eat whatever HE told me to.  I stayed a lot longer than I thought I would, but felt more ready than ever before when I left.

I went back to school (again) a much stronger student and a much better writer.  And I discovered I didn’t need the anorexia to pull straight As or be creative.  Those qualities came out in ways I couldn’t have foreseen without the anorexia holding me back.  And I was accepted into the grad school of my choice and moved 1,000 miles away from everything I had ever known.

Then this little angel was born:

Me and Tara, again a little under 5 pounds, June 2009

Tara joined her older brother in the ranks of Cutest Two Babies Ever.  Because of me being 1,000 miles away and logistical stuff, I haven’t seen her since she was this small. But I want to be there as she’s growing up.  I want to see my brother with an adolescent daughter in the house.  I want to see her in a dance recital or soccer game or playing the piano or getting an academic award (in English, of course).

When I began to slip this past winter, a great deal of that had to do with the sudden depression that hit after my cardiac diagnosis, a diagnosis that took away a lot of my normal day-to-day activities.  A diagnosis that changed how I define myself.  And yes, I freaked out and fell back on what used to work so well for making all those problems disappear.  Except I realized very quickly that the problems weren’t going anywhere.  And they wouldn’t.  And I wasn’t getting that “high” from restricting I had gotten in the past.  Instead, I continued to get more depressed and I freaked out more because I had relied on symptoms and was terrified of going “back there.”

These two little babies, who aren’t so little anymore, were always at the forefront of my mind while I was at Rader.  I couldn’t start another sick-well-sick-hospital-well-sick-hospital-well cycle.  My stay, as is part of the program there, was the shortest of all my inpatient stays for the eating disorder, but I got back on track and by the time I came home, I felt secure on that track once again.  I wish I hadn’t started using behaviors again.  But maybe it was a good thing, because I realized that the eating disorder holds no magic anymore.  There was absolutely no gain from any of the symptoms, only more misery and the knowledge of this is not who I am anymore what the hell am I doing?

I’m going to be there at their high school graduations.  And some day, when they’re old enough to understand, I’ll find a way to tell them that they saved my life.  They gave me a reason to fight.

Eventually, I became the reason I was fighting so hard.  But those first couple of years, it was all for Alex.  It took awhile to develop enough of a sense of self-worth for me to fee “worth it.”

My advice: find anything that makes your life worth it, be it a child, a niece or nephew, a grandparent, a pet, anything.  Remind yourself every day of that reason.  Carry a picture with you.  But hold on tight.  Keep holding on, and eventually, you’ll start to see your own self-worth and you will become your own reason for fighting.  But I do believe that for most of us, that takes time.  I mean, we put ourselves down for so many years; it takes time to heal that.  So for now, hold on to anything you can.  Hold tight and as you get stronger, draw that person or animal closer to you and teach you self-love.  There is no better teacher than someone or something that knows nothing other than unconditional love.

What are your reasons for fighting?  What do you hold onto?  Let’s see how many reasons we can list.  Someone out there may need a list; someone out there may need a reminder.

June 18, 2010 Posted by | Eating Disorders, recovery, relationships | , , , , , , , , , , , , | 6 Comments

the choices Judas made

“The song touches on students and school violence. It was written by Antje Duvekot. She calls it “Judas” and wrote it in response to events like those that occurred at Dunblane, Scotland in 1996 and most recently in Kauhajoki, Finland in 2008.” (description of song under photography montage set to this song for a school project by username teasedboy)

One of my friends introduced me to Antje Duvekot awhile ago and I have fallen in love with her entire oeuvre.  I was listening to “Judas” this morning and the whole “nature vs nurture” idea and family influence.  I admire Duvekot for this song; it’s a side of Judas no one else has considered.  In all my years of reading the Bible in study groups or Sunday School, Judas’ actions are explained away by the desire for gold.  And I’ve always thought, “Really?  He gave up his entire life for this man and was willing to betray him for a bag of coins?” I have always thought, “There has got to be more to this story.”  Things the authors of the Bible couldn’t have known: Judas’s thoughts and feelings and history and motivation.

This song paints a story of Judas’s childhood (set in modern day times) and compares his family and the way kids treat Judas at school to Jesus’s family.  In the song, Judas is the outcast at school, with an abusive family to return to every afternoon. I mean, God didn’t pick just any woman to bear his son.  He picked a faithful woman, who had a “fiance” who believed in God and had enough love for God and Mary that he accepted and married a pregnant (single) woman in a time that that just was not done.  Pretty awesome, loving parents, no?

Nurture vs Nature.  If Judas had been brought up differently, would he still have betrayed Jesus?  We’ll never know, of course.  But this song makes me think of my previous post “It’s Your Choice“.   In the case of eating disorders, there was a time when the parents were blamed for their child’s illness, and the finger was usually pointed at the mother.  Now we know there are usually at least several different issues contributing to the developing of an eating disorder, from family dynamics to school pressures to athletics to trauma to abuse to media influence to other mental illnesses and the list could go on.

I don’t think anyone is born (Nature) with an invisible Eating Disorder stamp on their forehead.  There are a lot of perfectionistic athletes who are also driven students who don’t develop an eating disorder.  And as for the Nurture side: I’ve seen other people with eating disorders with extremely supportive families, with parents who seemingly don’t care; I’ve seen other people with early childhood trauma and some with “perfect” childhoods.  Some are good at school, some could care less about school.  Some are involved in sports, some are not.  There doesn’t seem to be anything out there that is an automatic eating disorder repellant.

But what about recovering from an eating disorder?  We now know that no individual chooses an eating disorder.  Recovery is another story.  Where does nurture and nature come in here?

I want to throw both nurture and nature out of the window when it comes to recovery.  When it all comes down to it, recovery is still a choice.  No one is lucky enough to have “this one will recover no matter what” stamped on his or her forehead.  It’s a hell of a lot of work.  You can have support, but the work you do is the work you do.  The choices you make are the choices you make.  Your past does not make them for you.  Your family does not make them for you, nor does your treatment team or friends or support group.  You make the ultimate choice to work for recovery and you make all the little daily choices that will keep you on track.

So maybe Judas came from a crappy background.  Maybe he had an abusive father.  Maybe he was an outcast.  Maybe his past did suck.  But when presented with the bag of coins, he still had a choice.  He could have walked away.

Maybe you don’t have the perfect insurance company or parents that can send you to treatment anywhere in the world; maybe you do.  Maybe you don’t have access to treatment at all, or maybe you only have access to minimal outpatient care, or maybe you have access to a really good treatment program.  Maybe your parents will drive you to that treatment program; maybe your parents will choose not to be involved at all.  Maybe Maybe Maybe.

Even with all these maybes, the choice still rests in the palm of your hand.  The past is in the past.  The future is out there somewhere.  But now, right now, you have the opportunity to make a choice.  Will I continue with the eating disorder, or am I going to fight it?  A choice that, in the beginning of recovery, must be made every single day, every time mealtime rolls around.  But it’s still a choice.

Don’t let your past determine who you are now.  What you do in this moment is all you.

June 17, 2010 Posted by | Eating Disorders, recovery | , , , , , , , , , , | 3 Comments

the closing of the hellmouth

DONE

Don’t get too sad, but this may be my last post about formspring.  I know, I know, it’s a site full of opportunities for social commentary, but enough is enough.

I stated in my previous “hellmouth” entry that I, personally, do not take people’s comments seriously.  When people on formspring debated MY recovery and MY definitions of MY recovery, it did not affect my actual recovery.  I am secure in where I am, and some anonymous poster isn’t going to bring me down, especially when their source of information seems to be the Facebook newsfeed.  Here’s a newsfeed:  status updates are not an accurate way of assessing the totality of a human being.  We are much more complex than the 420 characters that facebook allows for a status update.

I started laughing at the people harassing me.  I started letting my sarcasm come through.  I started calling myself banana’ed in my description as an attempt to ward off further debates about my recovery since the debates really aren’t helping anyone.

Why I liked formspring: I liked being asked questions about ME.  Like what books I read, where I want to travel, what three things I like most about myself, my favorite movies and colors and music, what and where I teach, etc.  I also really liked the honest questions about my recovery, about steps I took to get there, and about difficulties I had along the way and how I managed them.  And people were starting to ask about my trauma and a lot of people asked good questions about how I was dealing with that and how long the process was and how I managed to “get over” it.  (I don’t think I will ever fully get over it.  It’s still a little nagging dark spot in the corner of my mind that gets a bit darker and a bit larger from time to time.  And sometimes it shrinks, but it never disappears.)

Did you notice the past tense of “liked”?  I deleted my account.  Formspring has become an open invitation for cyber bullies to run rampant.  People’s answers are being twisted and misinterpreted and applied to other situations and people are talking about so-and-so’s answers to something behind so-and-so’s back, but of course so-and-so finds out that gossip is happening but doesn’t know what exactly and starts to get paranoid and hurt and angry and paranoid.  And rightfully so.  And instead of someone flat out asking so-and-so to clarify a statement, they run with their own ideas and the situation becomes drama and feelings get hurt all around and I’ve seen namecalling and I’ve seen people put other people down on someone’s page who isn’t even involved in whatever situation is happening and I’ve seen way too many people ask questions like “what was your lowest weight?” (my favorite answer to that question was something like “7 pounds 14 ounces, my birthweight.”).

I’ve seen too many people get hurt.  I’ve tried speaking up on formspring, and I’ve tried standing up for people I see getting hurt, but my words of course are twisted out of context and then used against me.  And it just doesn’t seem worth my time and energy anymore.  I wish I could have a formspring where people felt free to ask the recovery-oriented questions, because I don’t think they would ask them if they had to leave a name.  But I cannot continue to support this forum when I have friends in tears because of things being said about them on their own pages.

So I’m pulling out.  I hope other people follow suit.  My emotional energy is better spent elsewhere.  And if you are in the stage of recovery where it takes every ounce of energy to keep putting one foot in front of the other, your emotional energy is best spent on yourself and your recovery.  Not on answering questions that are more like accusations than anything else.  No one needs that.

I’m not naive, and I know my deleting my account will not spark a worldwide movement for everyone to delete their accounts, but I’m hoping a few of my friends will, for their sakes and for their mental well-being.  In this small pocket of the world I reside in, I’d like to see as few people get trampled on as possible.

June 13, 2010 Posted by | Communication, Eating Disorders, relationships | , , , , , , , , , , | 6 Comments

I am not that girl

Me. In the past.

So.  This is me.  About three years ago.  There is a lot about this person that I have carried with me in the past three years and held onto.  There is also a great deal about this person that I have let go of, willingly, thankful to have those bits and pieces get carried away by the ebb and flow of time.

But I am not this young woman.  I can dig down inside of me and remember what it was like to be her, but I am not her.  I have changed.  I have grown.  This is what happens in healthy development.  Three years from now, I will not be the person I am right now.  I will look at pictures from June, 2010, and have to dig deep inside of me to remember that person, who is so clearly present as I type this.

My point?  We are not our pasts. I was very early into my recovery in this photo.  Physically healthy, and 99% sure I wanted recovery, but there was still a part of me that had no idea what to do without the anorexia.  That small part of me has since disappeared.  One of the changes I have made over the years, one of those bits of me I’ve gladly seen wash away.  That part started to bubble up to the surface this past winter, and just the surface bubbling scared me.  I did not want that part of me coming back.  This sparked the whole “you’re not really recovered” debate that everyone else seemed to be invested in but me.  Because I was still sure of my recovery; I did not identify with the eating disorder.  I still saw it as my past.

And thanks to formspring, that debate about my recovery still surfaces from time to time.  Please note, the comments I get on formspring do not make me question my recovery, and they do not hurt me.  The concern in my previous post was for the people I have seen be actively hurt by what amounts to cyberbullying.  But I am just as sure as ever that I am recovered.

I noticed on another person’s page today, and I’ve seen this on several pages, a comment about “well you know so-and-so was really sick and into her eating disorder then.”  And my question is, why is that important?  Why bring that up?  There is no benefit to a comment such as that.  If the person is still ill, then it reinforces the idea that the only thing people see is her illness.  And if she has moved on and is in recovery, what does the past reflect about her now?  Absolutely nothing other than the fact that she used to have an eating disorder.

It is this idea of used to that seems to threaten a certain population.  Once an anorexic, always an anorexic.  Part of this is due to the medical community, where traditionally, that was the diagnosis for people with eating disorders: terminal condition, one you never truly escape from.  Thankfully, that diagnosis is losing its prominence and medical professionals have seen people fully recover and leave their past in the past.

Why can’t we do the same for each other?  I wasn’t my at my best, character-wise, when I was in the hospital for my eating disorder the first few times.  And I have to say that, in general, a hospital environment brings out parts of people that aren’t the greatest.  Even at Rader, the most caring inpatient environment I have ever experienced, I was not a pleasant person the first few days.  I am so thankful that the women I met there do not hold me to that person, but see me as I am now.  They have allowed me to grow, to leave the past in the past.

I am not sure why people are obsessed with who used to be sick and whether they were anorexic or bulimic or underweight or overweight or purging or not purging.  Do not hold onto these things, be them in yourself or in others.  Give yourself and others room to grow, allow them space to change.  Give them the grace and respect you desire for yourself.

Communities only succeed if they grow and change as time passes.  The same holds true for individuals and for friendships.  Growth and change.  Let go and move on.

June 10, 2010 Posted by | Eating Disorders, identity, recovery | , , , , , , , , , , , , , , | 4 Comments

Formspring=hellspring, sort of like the hellmouth?

deviant art

So I jumped on a bandwagon awhile ago and created a formspring account.  And after reading my *questions* today and the *questions* and answers of other people I follow, I’m about ready to delete my account even though A) sometimes it’s been a great deal of fun and B) I’ve gotten some serious questions from anonymous users about recovery and I don’t think they would have asked me if it was not an anonymous forum.

These *questions* are rarely questions, but are accusations and insults, placing the person who is supposed to come up with some great answer in a defensive position.  I’ve seen people get outright attacked on formspring.  I’ve seen conversations take place that are the equivalent of a catfight.  I’ve seen dirty laundry aired, often not by the person with the account, but by the person asking the *question* (starred, because it so rarely is an actual question but rather a statement of accusation).

This morning, one of my *questions* was:

You seem to be an intelligent person, so why can’t you just let your ed go and stop talking about it? Do you really think you’re in recovery, because you still seem very preoccupied with ed related things.

Yes, this was my question.  I have a feeling it came from the same person who asked me to define what fully recovered meant and asked if I considered myself fully recovered.  My answer to that question:

I consider myself recovered. For me, this means that there is a lack of behaviors and a lack of a desire to act on those behaviors or return to that lifestyle. I still struggle with body distortion, but I think it’s going to take awhile for me to be able to see how I really look when I looked at myself through a certain lens for so many years. But although I know I don’t see myself the way I actually am, there isn’t the hatred and desire to change what I see anymore.

Notice the “for me” preface to my definition, because I realize that everyone has their own definition of recovery.  And notice that I am honest is admitting I still struggle with body image distortion issues.  (Which, actually, I think the vast majority of American women have, even though they don’t have an eating disorder. Thank you, media.)

It’s not the first time my recovery has been challenged on formspring.  And I want to thank one poster who pointed out that of all the people obsessed with my definition of recovery and my state of recovery, it’s not me.  I’m secure in my knowledge of where I am.  But all these other people want to throw labels around.  I have some questions.

A) What is it about me saying I’m recovered that seems to be such a threat to some people?

B) If you are spending this much time obsessing about my recovery, how much time do you spend working on your own?

C) Why do you think it is appropriate to ask these questions in the first place?

Has anyone else noticed that the majority of insults and accusations and gossip are occurring between people with eating disorders or between people who used to have eating disorders?  Now, I might be mistaken, but having an eating disorder is hellish, and recovering from one is hellishness times 100, and it seems to me that we should support one another and encourage one another and not ask asinine questions such as, “Why can’t you just get over your eating disorder?” (yes, that is an actual question someone got asked.)  Bullying people (and that is what these *questions* amount to) is going to help the situation how?

I can laugh at the *questions* left on my page.  But I’m in a strong enough place of self-awareness and recovery that I know the comments are coming from ignorance and they don’t get me down or change how I act or influence my decisions.  But I am concerned that there are people who are not in that secure place of identity and recovery and they are taking these comments to heart.

So here is my plea to the people leaving these questions: stop the hurtful comments and questions and if you have a personal problem with someone, deal with it appropriately and privately.

Here is my wish for those on the receiving end: do not let these people change who you are, where you are in recovery, or influence your motivation for recovery.  Do not doubt yourself based on comments from someone who doesn’t know the whole picture but is generally gathering information off of the facebook feed rather than knowledge of you as a whole person.  Do not feel the need to defend yourself to them.  Delete their questions, set your account so that you can’t receive anonymous questions, and block people who routinely ask the asinine questions.  You do not need this in your life.  You need every ounce of energy you have in order to fight off the eating disorder.  Don’t waste it on formspring.

I’ve chosen to answer most of the asinine and ignorant questions.  And as I continue to do so, my answers get more and more snippy, which is something I don’t like about myself and which is why I may just delete the whole thing.

The option to post anonymous questions is not the same thing as being given permission to engage in cyber bullying.  It’s a sad reflection on the lives of those asking these questions and it’s a sad reflection on the state of the eating disorder community right now.

June 8, 2010 Posted by | Communication, Eating Disorders, identity | , , , , , , , , , | 10 Comments

I am “that girl”

When we look in the mirror, we all see what we think we look like.  For quite a lot of us, what we see when we look in a mirror is not what other people see when they look at us.  We hurl insults at ourselves, see flaws that aren’t there, somehow add inches to our waistlines, and rarely see the beauty other people claim to see.

What we think about ourselves may or may not match up with what others think about us.  Unlike looking in a mirror, however, we may be able to trust how we characterize ourselves with the knowledge that what so-and-so said is completely off base.

Or, what someone says about you can be a wakeup call, as I had  happen last night.  In the never-ending drama of Facebook, I was told I could not be this girl’s friend because she is now recovered and wants to distance herself from anyone still “caught up in that whole culture.”  When I think about myself, I think of the word, “recovered.”  And “caught up in that whole culture” initially felt like an insult.  But then I stepped back and thought about it.

I keep this blog.  I maintain friendships with people who are still very stuck in their eating disorders and with girls who are recovered and with girls at every stage in the middle.  I leave encouraging notes and ask how people are doing.  I am a member of more than one group about eating disorders and body image.

So yes.  I am recovered.  But I guess I am “caught up in that whole culture.”  But I don’t see anything wrong with that. I may be recovered, but I respect the journeys of other people and I know that recovery is a something you come to when you are ready and that no one can tell you or make you recover.  I recognize that it takes longer for some people, and not very long for others.  And there are a couple of reasons why I will continue along this path.

1) Although I wrote in my previous post that I’ve had friends walk away from me because they were afraid they were watching me die, I’ve had a hell of a lot more friends stick by me through the worst of it.  My friends in grad school did not see me as “the sick one.”  Or, if they did, they never made me feel that way.  I was, and am, Lexie, the creative nonfiction writer who is maybe obsessed with her cats and coffee and knitting and Beth Orton.  When I went into the hospital in 2005, they were there for me.  And they were there when I got back.  And I was still Lexie, the creative nonfiction writer who is probably obsessed with her cats and coffee and knitting and Beth Orton.

2) I am not ashamed of my past.  I’m not proud of some of the things I did while I was sick.  But I’m not ashamed of the fact that I had an eating disorder.  I tried lying about it for years and it only hurt me, so why would I start lying about it or hiding my past now?  It happened.  But you know what?  I made the decision to reach out and get help and recover, and I am proud of that.

3) Even though I voiced a lot of frustration in my previous post, I’m not going to change what I do.  I’m not unfriending the individuals I am most frustrated with.  I will continue to encourage them and support them.  Why?  Because do you know what it feels like to have someone leave you because you have an eating disorder?  Talk about a shaming experience.  And what about the day that comes when these individuals do decide they want to recover and then they look around their friend list and see only other people still caught up in the eating disorder and no faces of recovery?  You may say I’m being egotistical, but I’m being honest because I do have people contact me, people who I never thought would choose recovery, and they ask questions about where to find help and how to go about negotiating with insurance companies and what type of treatment center may work better for them.  Every time I can answer these questions, every time someone reaches out in an effort to kick the eating disorder to the curb, it’s worth it.  It’s worth every other heartbreak–big and small–along the way.

4) I think that it’s important for individuals who have recovered from an eating disorder to talk about that recovery.  Not gossip about their sickest days, but discuss the steps they took to get better and what life is like without an eating disorder holding them back.  I was lucky enough to know multiple people who had fully recovered when I made the choice to recover.  I had hope that it was possible.  And in this day of Facebook and online networking, if I can be a face of hope for someone, then I will continue to do exactly what I am doing.  Because what if that person doesn’t know anyone in real time who has recovered?  How is s/he going to believe that s/he can do it too?  And I’ve watched certain individuals on Facebook, individuals who when they friended me were so “caught up in that culture” that I honestly didn’t think they’d ever change–I’ve seen them change.  I’ve seen some make these gigantic leaps toward recovery and others make small but steady progress toward health.  And every single time I see it happen, it’s beautiful.

I don’t introduce myself as “Lexie, the girl who was anorexic” but I don’t hide it.  I don’t censor wall posts because I’m afraid of what other people will think of me.  I hope they think that I’m Lexie, the creative nonfiction writer who is most definitely obsessed with her cats and coffee and knitting and Beth Orton, who just happened to recover from an eating disorder and is willing to help other people get there, too.  So if I’m “that girl,” you know, the one “caught up in the eating disorder culture,” so be it.  Because so many people stood by me when I was at my worst and were not ashamed of me and because there are too too too many women and men out there who need someone to stand by them.

It may mean I’m labeled and it may mean I get my heart broken or stepped on more than others, but it’s worth it.  Their lives, their souls, their spirits are worth it.

______________________________

I wrote this entry as an explanation of why I chose to stay “caught up in that culture” not as a critique of the individual whose comment was a jumpstart for this post. I do understand that each person is different and that each person’s recovery is different.  If you find that maintaining contact with people who are still sick is triggering and jeopardizing your recovery, then by all means, take the steps to ensure your recovery.

I do still wish that more people who are recovered would talk about their recovery and what life is like without the eating disorder, because I think that sends a message of hope to those still struggling.

June 5, 2010 Posted by | Eating Disorders, recovery | , , , , , , , , , , | 6 Comments

It’s your choice

it's all about choices by *light-from-Emirates (deviantart.com)

So I don’t think this is going to be one of my most popular posts.  And please do not think it’s directed at any one person.  It’s just something I’ve been noticing in general lately, and I’m starting to lose patience.  And I feel bad about that.

What I’ve been noticing from a significant number of people with eating disorders on facebook: a lot of people are complaining about their current treatment or their lack of treatment, but when anyone leaves a comment with a suggestion of where to go, what to look for, alternatives that could help–the person in the complainer’s seat gets angry at the people trying to help.  And sometimes flat out states that they are going to give up, that there is no hope.  Even though ten people might have left comments with helpful suggestions.

I wish the picture had the words, “Life” and “death” but “love” and “hate” also work, if you think of it in terms of love towards oneself equalling Love and hate equalling death.

I know that none of us chose to have an eating disorder.  Even those of us who thought it might be nice to lose a couple of pounds and had that turn into full-blown anorexia or bulimia, we didn’t choose this hell.

But.  At some point, you are going to have to make a choice to either stay in that hell or leave.  You have to make the choice about whether or not you want to recover.  No one can make you.  Sure, someone can make you gain weight, but we all know how things go when you get discharged and set your mind on losing that weight again.  Wanting to get better is a choice that has to be made by each individual.  And everyone comes to that decision at a different point in their lives.  But there does come a point where continuing with the eating disorder is a choice you are making.  When people around  you are reaching out with suggestions and support and encouragement and you slap each one away and come up with excuses why each suggestion just won’t work, you are making a choice to stay stuck.

No one ever said that making the choice to get better is easy.  It’s scary.  It’s downright terrifying.  And it’s a hell of a lot of extremely difficult work.  I’ve seen people recover by going IP, I’ve seen people recover by working with their OP team, and I’ve seen people recover who have access to no treatment at all.  The first four times I was on an EDU, I had no intention of getting better.  And I relapsed immediately.  So I understand the difficulty in making this decision.  The fear, the uncertainty, the confusion. . . I get it.  I’ve been there.

Here’s where I’ve also been:  at the graveside of someone who has died from an eating disorder.  I’ve lost over ten real-time friends to these illnesses.  And hardly a week goes by on facebook, where I don’t hear of another death.

Maybe it’s my depression talking, but lately, I’ve wanted to walk away from it all.  Stop supporting people, encouraging them and offering help only to be met with a rebuff and stories about why everything is impossible and there’s no point in trying anymore.  Do you know what it feels like to have someone tell you they are going to stop trying?  It’s like a knife stab to the gut.  Do you know how much I want to drive cross country to visit a couple of handfuls of people and shake them and tell them that it’s not pointless until you stop trying?  Do you know how scary “I’m giving up” is to hear?  To go to bed and wonder if that person will be alive the next day?  I am so tired of funerals and memorials and R.I.P groups on facebook.

And before anyone throws the term at me, I DO feel hypocritical for feeling this way.  Because I, too, was once stuck in the disorder and refused to take steps to get better.  MY friends wanted to walk away from me, and some of them did, because they were afraid they were watching me die.

I honestly think I’m more understanding of the people still fully stuck in their eating disorders, not even considering recovery, than I am  understanding of the people who tell me they want to get better and reject everything that could help them get there.

So yes, hurl the insults my way for being insensitive and for not understanding where people are coming from.  But remember I went through it too.  Remember that I have watched people slowly die from these illnesses and that the pain doesn’t lessen with each subsequent death.  Remember that I still dream about girls that have died, only to wake up to the realization that I never will hear them laugh again, that all it ever can be is a dream.

The eating disorder was not a choice.  Recovery is.  And I will support every single step you take towards recovery.  And I will grieve each time you choose a path that takes you further away from recovery.

June 4, 2010 Posted by | death, Eating Disorders, recovery | , , , , , , , , , , , , | 11 Comments