Surfacing After Silence

Life. After.

Asato Ma Sat Gamayo

Om Namah Shivayah

I mentioned in a recent post that, “for me, yoga has been the most amazing tool for recovery.  It was on the yoga mat that I first felt this sense of awe at the power and strength in my very own body.”  My first yoga class was a quarter unit, no credit half-semester phys ed class I took at Moravian College and I honestly really didn’t like it.  It was definitely Hatha Yoga, although the instructor really didn’t follow any true yoga school format.  It was slow, meditative, and non-strenuous.  Then I signed up for a class at the Y because the description promised something along the lines of an invigorating workout and increased muscle mass and strength.  And I walked into my first Astanga class. And fell in love.  Both with the discipline of the practice, the increased strength and stamina, and the teacher.

The teacher was not only an excellent instructor, but an excellent reader of people.  She never came out and asked if I had an eating disorder.  But she could tell that I wasn’t in the yoga class for the union between spirt and mind and body that yoga is all about.  (I would be into that union later.)  She didn’t judge me for it.  But she did talk to me one day as I was rolling up my mat and gear and gave me my first mantra, pictured at left in the form of my recovery tattoo: Om Namah Shivayah, roughly translated (and I’ve heard it translated different ways by different speakers of the language) as “I respect/honor the divinity within me.”  At the time, I had no idea what she meant, or was getting at, but I think she could sense my dissatisfaction with my body and desire to change it.

I began using that mantra, and it took awhile to figure out why it applied to me and then even longer for it to really sink in and for me to believe it.  I recently was researching mantras and mala beads, since mine broke awhile back, and found Asato Ma Sat Gamayo : Lead me from the unreal to the real.  For me right now, the “real” I want to be led to is the present place and time, and the acceptance of the present place and time, since I spend so much time either worrying about the future or wishing I were somewhere else.

Tonight I thought of someone’s body positive suggestion which I will write here as well as on the comment to that entry (contest entry!!) later this week, since it is rather specific and I don’t think a lot of people were going to write in with this suggestion:

put on a swim suit or go without one if you are brave enough and lucky enough to have your
own pool. go outside and simply float in the water.  Trust your body to hold
you up in the water and feel the water surround your body.  Lay as still and
quiet as you can and simply feel the pressure of the water, let it caress
your body.  Breathe deeply in and out & notice how your body sinks slightly
with each breath you let out and rises with each breath you take in.
Sometimes just relaxing and enjoying the monement can make all the
difference.

First off, the wording is beautiful.  Second, this is a perfect mindfulness practice.  Third, what a way to learn the power of your body and to honor that and to feel the sensations on your skin and not judge those sensations, but just be aware of them and maybe, just maybe, take pleasure in them.

Well, i didn’t go to my pool.  Still can’t soak the knee since I have stitches still. But I did soak in the bathtub (knee propped up on the bath tub’s edge) in a wonderful lavender scented bath.  And repeated the Asato Ma Sat Gamayo mantra for a bit and then thought of this suggestion and closed my eyes and just let myself feel the water around me and smelled the lavender and breathed deeply and let myself just relax.  And be in the moment.  It was a wonderful end to my day.  My concerns of school melted away.  I had no thoughts of body dissatisfaction.  I just felt good and peaceful and now, even after my bath, I still carry that peaceful feeling with me in a well-taken-care-of body.

Here’s to the real, the here and now.

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July 28, 2010 Posted by | Body Image, Eating Disorders, mindfulness | , , , , , , , , , , | 4 Comments

“real”

REAL?

So I have no doubt this will stir up some angry controversy.  But here goes, anyway.

I’ve noticed this trend of using the word “real” with the word “woman/en” in some way.  There’s an organization called Revolution of Real Women.  There are groups called “real women have curves.”  And these two things bother me.

Yes, real women DO have curves. Real women are also straight, thin, pear shaped, apple shaped, hourglass shaped, athletic, and overweight.

REAL as in unimaginary.  Living breathing and actual.  I think (I hope) we can all agree that ALL women are real in this sense.

REAL as in what I grew up hearing “the god’s honest truth” or “honest to goodness” or “actual”. This calls into question “what is an honest to goodness woman?”  I ain’t touching THAT issue with a 23 foot pole.  I’ve known women who are tomboys, flirtatious, girly-girls, fashion centric, jeans/plain t-shirt all time centric, makeup loving, make up hating, boy crazy, girl crazy, asexual, and then there’s the whole gender question of what makes a woman a woman and a man a man?  Is an individual that was born a biological male and identifies as a female any less of a woman that one who was born biologically a woman (or vice versa)?  I’m certainly not going to say no.  So the idea that someone is a “real” woman based on “honest” leaves a bit to be desired.

And now there’s this “real women have curves” lingo being flung about.  And Revolution of REAL women organization.  Which originally I thought was an awesome idea.  But I flipped through all their photo albums and their fan photos today and their comments.  I wouldn’t be a “real woman” in that group.  I wouldn’t “fit” the picture.  I can not claim the word “curvy” in my description.  Never could.  I mean, my body is not made up of straight lines, but I could hardly enter, let alone win a wet tee shirt contest since it’s usually the curvy women who win.  (Should this be on my bucket list: enter a wet tee shirt contest?)

Sure, at my all time lowest weight, I had very very little curvature.  But the vast majority of my anorexic years were not spent at that weight.  I was underweight and unhealthy, but not emaciated and boney.  As i gained weight, i gained it in an even way across my entire body.  Meaning that my cup size has barely changed.  I’m what they call an “almost B.”  I was and “almost B” when I was underweight.  I’m still an “almost B” even though I’m 20 pounds above my ideal weight.  The number in front of the “almost B” has changed, but the ratio hasn’t.  Nor has my waist to hip ratio.  The numbers of both have gone up, but in the same proportion.

I learned a lot of things while doing my body tracings at Sheppard Pratt.  A) You cannot draw a strait line from my armpit to my ankles.  I do have a natural curvy line that is my torso and hips, but it’s not all that curvy.  Armpits and hips are actually close to the same width.  And my “hourglass shaped waist” doesn’t “hourglass” in much.  B) I am a lot LESS curvier than I thought, which I learned through doing a profile tracing.   I had always feared having curves because of all the abuse issues.  Then I did my first profile tracing and those annoying breasts and ass that I thought were obnoxiously present and needed to be whittled away in the name of disappearance?  Yeah, they hardly existed at all.  And now, at a healthy weight, slightly overweight weight, that profile hasn’t changed, it’s just a little wider than before.  I still have no ass.  My breasts, not going to win that wet teeshirt contest I mentioned earlier.

I am naturally NOT a curvy person.  Yet all the photos celebrating “real” women in “revolution of real women”‘s albums/fan photos are photos of very curvy women.  I know people who have a straighter figure than I do–and they come by it naturally.

We should be celebrating the television shows that are promoting the fact that women of all sizes are human beings, but at the same time, by the language that is now being used, people are getting the idea that non-curvy women are somehow not real women.

I think we can agree that someone who is extremely underweight or overweight is in pain caused by an eating disorder or medical condition that causes metabolic malfunctioning.   And that their body shapes aren’t “real” as in they aren’t “natural”.  Steps are being taken that change the individuals shape and size.  But are you going tell someone who is in treatment for anorexia that she’s not a real woman because of her shape?  or a morbidly obese woman with binge eating disorder that she’s not a real woman because of her shape?

The state of being a woman should have nothing to do with one’s shape.  I am all for body positive groups (see my body positive contest) and fostering healthy self-image and doing away with negative body talk, regardless of your shape or size.  I really do think this trend of using the word “real” is going to have negative effects, especially since they are celebrating so-called “real” women and openly downplaying shapes and sizes that they deem aren’t “real”.

The focus should be on health–both physically and mentally–and creating a positive lifestyle.  It should not be about declaring one set of people “real” and the others–what? imaginary? not honest?  not true?

July 27, 2010 Posted by | Body Image, Eating Disorders | , , , , , , , , , , , , , | 9 Comments

American Heart Walk 2010

after surgery, still hooked up to monitors.

This is my yearly shameless self-promotion entry.  I am walking in Colombia, Missouri’s American Heart Association’s Heart Walk.  I did this last year and it was awesome.  The walk is August 14th.  Not that far away, but still enough time to donate.

Yup.  I am asking for donations, which you can do here:
My Personal Donation Page

People have been apologizing for “only” donating 25 bucks.  but imagine if I had 100 people donate just 5 dollars–that’s a trip to starbucks–and that would be 500 bucks!  If the online site will not let you donate that amount, email me at KatchukMFA@gmail.com and I will give you my snail mail address.  Or if you don’t like donating through online places.  But time’s running out for snailmail, so that’s the only drawback.

I’m a big fan of the American Heart Association.  That surgery I had last year?  The one that involved implanting a chunk of metal in my chest as a lifesaving device?  The AHA was on the sidelines, backing research back in the 80s for the first ICD. They back research for new medications, new therapies, smaller implantable devices so that people like me don’t have a third breast sticking out of them and so that babies who need them can safely have one.  My heart medication is stamped with approval by the AHA.  They are spending more time on education and awareness events such as the Heart Walks, which foster healthy lifestyle changes.  They do prevention work.  They unite doctors to help fight deadly diseases so that patients such as myself can find adequate care and they unite individuals who have these illnesses so that we don’t feel alone.

I’ve lost a friend my age to heart disease.  I lost the best coach I ever had due to heart disease.  One of my friends from college and her brother also have ARVD.  My friend’s daughter was born with a heart defect and underwent open heart surgery as a baby and still needs medications and monitoring and a common cold isn’t just a common cold for us.

This walk is something I can do to help.  Sometimes, because of my heart, I feel so powerless to do anything to change things.  And I can’t run fundraising events where the cost of my entry fee goes to a charity.  This is a free walk that encourages people to make healthy lifestyle changes while allowing people to fundraise to support the American Heart Association.

We need your help so that we can help live full, long lives.  We need your help so that children can live free of worry (and their parents, too!).

Please consider donating.  My goal is 1000 dollars because that’s how much I raised last year.  So far I’m at 225.  I do believe we can get there.

*shameless self-promotion over*

July 27, 2010 Posted by | heart | , , , , , , , | Leave a comment

Body Positive Contest Time!

In honor of Be Body Positive Day, I’m holding a contest–with actual prizes.

The task: come up with as many ways to honor your body or treat your body well as possible.  For each suggestion you submit, I will write your name on a slip of paper and throw it into a bucket, and then will draw two names out at the end of the day on Saturday, July 31st.  At that time, i will also post all the suggestions in a comment.

here’s how to sumbit:  email me at KatchukMFA@gmail.com with your list of Body Positive ideas.  I am having everyone email their suggestions because I dont’ want someone to read a prior comment and go “Oh that was going to be my idea!” an not submit an entry.  People can have duplicate ideas, but I will create a master list at the end of the week.

If you would like to participate, you must also be willing to give me your name and mailing address in case you win.

Please keep all suggestions recovery-focused.  No “go for a run” type of comments, given that that may be extremely UNhealthy for a lot of people.  And while I think treating yourself to a cookie or glass of wine could be ways to celebrate, they aren’t for other people.

So let’s find out how many ways we can be nice to our bodies without the use of food or alcohol (or any other substances) or exercise.  I know i just “did” one only five minutes ago.  (my secret for now!)

Think there can be over one hundred different things to do?  Let’s find out.

July 26, 2010 Posted by | Body Image, Eating Disorders | , , , , , , , , , , , | 2 Comments

celebrate the simple

simple things

Recently, I’ve been keeping a prayer journal.  I don’t write down lists of things I want to remember to pray about; I actually write out my prayer.  Sometimes speaking my prayer–even if it’s in my head–is difficult for me because I suddenly have this “I must word things perfectly” feeling come over me.  But I always feel at home while writing.  I don’t write in this journal every day, just when I feel, well, led to do so.

Last night, I was almost ready to close my eyes and I relaxed and thought to myself, “I am content with this day.”  And then I was suddenly awake. And I felt pulled to write in my prayer journal.

I think that I am more likely to remember to pray when the chips are down–when I’m feeling low or depressed or lost or confused or if someone I love is sick.  And when things are going really well, I just don’t pray.

Last night I realized that it’s just as important for me to keep a prayer journal when things are going well as it is when things are sort of crappy.  It’s just as important to be thankful for and celebrate the good in life as it is mourn the negative parts of life.  God doesn’t only want us to talk to him when we’re in tears; he’s able to laugh and smile with the best of them.

I think the same idea holds true in recovery and therapy.  About three months ago, I almost quit therapy.  Even though I was depressed and needed to be in therapy.  But there were so many sessions where I walked away feeling like shit because I didn’t use enough skills, or apply the “right” skills, or do the right things–basically I walked away from a lot of sessions feeling like nothing I did was every good enough.  Which, granted, is an issue of mine–the whole “not feeling good enough” thing–but it was getting pretty extreme.

So I wrote my therapist a letter.  Typed and single spaced, it was two full pages long.  And I emailed it to him and then we had that as a starting place for when we next met.  He had no idea I was feeling the way I was.  And he never meant for me to feel that way.  And we realized that, in my case, the DBT diary cards left something out.  DBT diary cards do focus on whether or not you engaged in certain behaviors, and what behaviors get put on the card varies from program to program.  Which is great, because it lets the therapist know if you’ve had trouble with these behaviors during the week, but if you are not only not engaging in behaviors, but not wanting to engage in them–leaving the “urge to self-injure” column full of 0’s–well, it’s not as helpful.  And yes, on the back of the card, you circle what skills you used each day, but you circle the skills you use even if you didn’t mean to use them as skills–ie, knitting for me is a form of mastery; even if I don’t do it with the intention of building mastery, I do it quite a bit.  So the circling of skills isn’t as helpful as it was when I first started DBT work over ten years ago.

So now, each day, I write down three things I am proud of, and give that to my therapist at the beginning of the day.  It has definitely helped with the validation issue.  And it’s also become a good tool for him–by looking at my list, he knows, in general, how my week has gone.  One week I didn’t turn in a list, because I couldn’t think of anything worthy of being on that list.  But he explained that the list is important, because it tells him “where” I am, and where our goals should be.  So if I have a week where “getting out of bed” is something to be proud of, my goals are going to be a bit different than the weeks when each day has at least three things that are more in line with our overall goals–challenging body image distortions, increasing social activities, being assertive in certain situations.

But there are days when getting out of bed is a challenge.  And instead of feeling bad that I didn’t do more on that day, I should be proud of myself for ignoring the depressive thoughts and getting my ass out of bed and doing something–anything.  There are days when crocheting a pot holder is something to celebrate.  Those days are no less important than the days when I write an essay or finish a chunk of schoolwork or translate a long passage of Latin.

We’re told “don’t sweat the small stuff” but I think we should also be told, “Celebrate the simple.”  Take each day on its own terms, without comparing it to or measuring it against any other day.  Celebrate the here and the now, not what you could have done.

July 25, 2010 Posted by | Eating Disorders, mindfulness, recovery, therapy | , , , , , , , , , , , , , | 2 Comments

“real” recovery

Statue. Definitely not real.

BEFORE READING THIS ENTRY please take a look at my entry, “the insanity of the eating disorder community” because I added something at the end.  For those who were following everything, the individual and I were able to be honest with one another and work things out, and not only is the situation around the group resolved, but our relationship has been restored as well.  Honesty really does rock.

This is one of my favorite pics from an area flower garden I go to.  I think we can all agree that the woman depicted is not real.  Real as in “alive, breathing, an individual capable of thought, etc” type of real.  She’s a statue, made out of concrete, fixed in time in this eternal pose.  She will not talk back to you–and no, I haven’t tried talking to her.  But I’m assuming she wouldn’t talk to me.  At least not outside of my own head.

But through conversations with friends and comments here, there has been this idea of “what is recovery” and, more specifically, “real recovery” floating about in my head.  So I want to put my two cents in.  Again, keep in mind, this is based on my own personal experience.  The criteria I hold up for my own personal recovery may not be your definition of recovery, and that is fine.

Is there such a thing as “real” recovery?  I mean, we can’t take a blood test and find out if we’re still anorexic, bulimic, or a compulsive overeater.  And we can be symptom free but still really stuck in the eating disorder.  Or we could be struggling with some behaviors and be in the best spot we’ve been in mentally for a long time.

There is no set description of what recovery from an eating disorder is or is not.  Partly because for so long the idea held by all professionals was that you never could fully recover, that you would always be guarding against a relapse or behaviors and that you would always struggle with disordered thoughts.  That view is changing.  And I am so glad, because I was told this whole “never recover” line and thought “If I can’t really recover, then why bother trying at all?”  Which then turned into the other end of black-and-white thinking and I decided to settle for nothing LESS than full recovery.  And I’ve learned that thinking like that may not have been the best thing, either.

I consider myself fully recovered.  In fact, I consider myself on stronger ground than when I left treatment in February.  I am back to intuitive eating, and I have a healthy relationship with exercise (well.  I did. Now I have a healthy relationship with my bed and pillows to prop up my leg!), and I’ve even come to accept the new body I have as a result of the thyroid problems. All of this is tempered with the knowledge that I may struggle with the desire to restrict at some point in the future.  two years ago I didn’t think I would/could ever struggle again.  That was before my life was turned upside down and everything I had come to define myself by was changed in some way by the cardiac diagnosis.  So I have learned that there may be times in my life where everything feels completely out of my control and I need comfort and restricting may seem tempting.  At the same time, I also know, more than anything else, that I cannot relapse.  Not as in “I don’t want to go through that hell again” but as in, my body–my heart–could not handle a relapse.

For me, recovery has meant this amazing experience of learning that life is actually really awesome when I’m not sick.  That even life’s sucky parts are better than “life” with an eating disorder.  That freedom is an absolutely thrilling thing.  I am now fully participating in life, which is something I couldn’t when I was tethered to the eating disorder.  I can enjoy each little moment for what it has to offer me, for what I have to offer it.

Recovery does not mean life is perfect.  I still struggle with depression, as I have Bipolar Disorder.  I still have bad days–just like every single human on this earth.  Sometimes I don’t want to work or go to school or see people.  While I have accepted the fact that I weigh more now, and that I may not ever get back down to my “ideal weight” because of the thyroid problem, I have yet to fully love this new body.  I think I will in time, because I had learned to love my body after being at my ideal weight for awhile.  I have a feeling it will happen on the yoga mat again, once my knee heels.  For me, yoga has been the most amazing tool for recovery.  It was on the yoga mat that I first felt this sense of awe at the power and strength in my very own body.  I’d been a competitive athlete since I was a child, but it was yoga that taught me to love my body for all it could do for me.

I have known people who really have recovered–no desires, thoughts or behaviors–and never looked back and it’s been a matter of several years.  It really is possible.

But I’ve known more people for whom we have yet another eating disorder duality: the stage of recovery where A) you realize life is much better without the eating disorder and you aren’t engaging in behaviors or letting thoughts stop you from doing anything and B) you still think about the ED all the time.  Either because you want to lose weight, you want to use a behavior to feel the same old comfort/release, or you’re just not sure who you are yet without the eating disorder.  You love recovery but still think about the eating disorder.

I think that a lot of people get “stuck” in that stage for longer than they thought they would, and I don’t think people talk about it that much.  There is a *new* (meaning it wasn’t there when I was active on the forums) forum at Something Fishy called “Advanced Recovery” and when I first saw that forum I thought, “why?” but I think that forum exists for people in the stage I’m describing.  I was in that stage for about a year, after my first time at Sheppard Pratt and before my “Holy crap, I’m no longer anorexic WTF am I supposed to do now?” freak out/relapse.  It was not a fun time.  I felt pulled in two directions constantly.  I knew I wanted recovery.  And I was not engaging in any behaviors and was healthy.  But my mind kept going back to the ED somehow.

I don’t think people in this stage are “less recovered” than I am.  I think that recovery is a continuum.  One that is different for each person.  And if you’re fighting those thoughts and resisting behaviors, you should be damn proud of yourself.  Berating yourself or feeling guilty for having thoughts is not going to help you (in my opinion).  Recovery is a process.  Again, each person spends a different amount of time in each stage.  Some people skip over stages.  Some people spend a couple of years in one spot and then make a sudden leap forward.

I think that once you start living life and letting go of that eating disorder identity, and you’re not engaging in behaviors, you are further along on that recovery continuum than you may think you are.  Thoughts are only thoughts.  Acting on the thoughts is a different thing.  Having a thought and then saying, “I am NOT going to give in” or “I am NOT going to let this thought determine what I do” is a very difficult thing and an extremely healthy thing.

I’m recovered.  My body image isn’t all that great again now that the whole thyroid thing/not being allowed to run has changed my general shape.  But the midwest is a bit hotter than northeastern PA.  And i decided that I was going to buy –and wear– shorts this summer.  And have discovered that wearing shorts in 100 degree weather is SO much nicer than wearing jeans.  And that allowing myself to put on a bathing suit and go down to the pool is a welcome relief on hot days, and worth telling myself, “I don’t care if I don’t think I “should” wear a two piece, I’m going to and I’m going to relax by the pool and cool off and have fun anyway.”

So throw the idea of “real recovery” out the window.  Define recovery for yourself.  Decide for yourself what you want your recovery to look like.  Give yourself time to get there.  And be damn proud of yourself for each and every little victory along the way.  How long did you have the eating disorder?  It’s not going to go away over night, or in one week.  It takes time.  And just because you aren’t what you call “fully recovered” doesn’t mean you don’t get to celebrate where you are now.

July 23, 2010 Posted by | Body Image, Eating Disorders, identity, recovery | , , , , , , , , , , , , , , | 10 Comments

advice from other readers???

from deviantart.com again by Queen666

So I received this question on my Questions and Topics page, and man is it a tough one, and I’ve struggled with this myself:

Hi,

There is a girl who volunteers where I work part-time. I see her about once a week. I don’t know her and do not really interact with her, but I’ve noticed a dramatic weight loss in the last year. She is starting to appear sick, in my opinion. I find myself watching her from afar and I feel upset. I think this is because I had anorexia for some time in my late teens, and although I don’t KNOW this girl I am worried. I wonder if I should say something…to her or to her supervisor who I’m sure must also be aware of the drastic weight loss. What would you do?

Also, do you find that most people who have had anorexia relapse in the future? With myself, I had some behaviors around age 29 and dropped weight. The eating disorder coincided with trying competitive running again and dealing with marriage problems. I lost weight–not nearly as bad as when I was younger–but I tried to maintain an underweight body for about 2 years. I wasn’t as thin as I was as a teen with anorexia, but I knew I was underweight and it was purposeful.

After this time period of 2 years, my behavior normalized and of course I gained back what I lost. I am now 35. I find I have no desire to be a competitive runner because unfortunately for me it seems to stir up body image issues, perhaps due to my first episode of anorexia as a teen. I am at a healthy weight now and do not restrict. I also am not exercising that much. One thing I notice is that seeing a very thin girl upsets me. I guess this girl at work strikes a nerve because I don’t want too see others go through this.

I’ve been in this situation–either at work or in a class with someone and I don’t *know* them but I’ve watched them deteriorate before my eyes.  And I never know what to do.  I know from my experience when I was sick, if someone approached me, I would have denied it to his or her face and probably lied through my teeth about having some illness or something.

But at the same time, people did approach me and multiple things always went through my mind:

A) “YES. Someone noticed.  I’m succeeding.”  (succeeding as in terms of the eating disorder.)

B) “SHIT SHIT SHIT SHIT SHIT. Someone noticed.  What the hell am I supposed to do now?  I’ve better hide this better.”

C) “Someone finally noticed.  They seemed concerned.  Maybe I could talk to them?”

That last one was always that voice of health in my head–that voice was always there, sometimes a lot weaker than the ED voice, but it was always present to a certain degree.  At the very same time that I wanted people to notice because it meant I was doing “good” with the ED, I wanted to not be noticed AND I wanted someone to notice and take me by the hand and help me.  Am I alone in experiencing this conflict?

It took multiple people to voice their concerns before I reached out my hand and took the thread of hope they were offering me.  And I’m thankful for all those people who offered, even if I refused, because eventually, hearing it enough gave me enough hope/courage/desperation to accept someone’s help.

My suggestion: Find a time where you bump into her casually alone.  Even if you have to set up this ‘casual chance encounter’ by the water fountain or whatever is the equivalent in your office.  And say something along the lines of, “I’ve noticed you haven’t seemed very happy lately, and I’m concerned.  I went through a rough time of my own before and sometimes it helped having someone I could just talk to.  If you ever need to talk, or want to email me, I’m here.”  I wouldn’t mention the weight loss or any signs of physical illness. I think that would set off too many alarms in her head.  But maybe if you focus on you noticing her emotions (even if she hasn’t seemed sadder than normal, I bet she is.  This disease is hell.  And if she really does have a physical illness that is the cause of the weight loss, that’s hell too, and she may be glad that you reached out.) will tell her that you noticed her as a person first and not as a person of a certain size or shape, if that makes sense.

I honestly don’t know about approaching the supervisor.  If the supervisor is trustworthy and sensitive and wouldn’t confront the girl in an accusative manner, it might be good?  or it could backfire.

I’d honestly like to know what people think of this.  (Again, please comment on the blog itself since not everyone accesses this through Facebook)

As for the question about relapsing.  I’ve known people who recovered and never relapsed.  I’d say most people do slip up again at some point.  Be it through a full blown relapse or through a return to slightly more disordered behaviors or through a return to the thought processes involved in the eating disorder.  I honestly never ever thought I’d ever have urges again, and then I was diagnosed with the heart condition and got severely depressed and had to withdraw from school and my world was so unstable and I found those urges coming back, which scared me shitless, as I stated in my last post.  So now I say that I am fully recovered, but I am aware that during times of really big upheaval and turmoil, I may have to fight those urges again.  But I don’t think that makes me less recovered.  Because I know more than anything else I can’t relapse, and I am loving life to much to even want to relapse.  But I think there are times when life is all chaos and I still want comfort and this winter, i couldn’t find that comfort anywhere else so I thought of the eating disorder.  Now I know that I need to make sure I take better care of my emotional needs.

but I think you’re experience is quite normal.  And it seems like you managed to get things back in line and learned what triggers you most of all.  I know for me that competitive sports is a trigger–and like you, it would be running.  I think I could join a volleyball league and be fine.  But there is so much back history tied to running with me.  It’s why when I recovered, I didn’t run at gyms or even with other people.  i didn’t want to compare myself to anyone, because that’s a dangerous thing for me and running.

So.  Feedback?  What would you do if you noticed someone suffering, but didn’t know them well as you would a friend?  How do you approach it?  And do you find yourself comparing yourself with that person?  Do you find yourself not wanting them to go through what you did?  Perhaps both at the same time?

July 22, 2010 Posted by | Communication, Eating Disorders, recovery, relationships | , , , , , , , , , , , , , , , | 7 Comments

the insanity of the eating disorder “community”

"insanity" by anna-earwen (deviantart.com)

I was going to write this post this morning, but thought to myself that I should calm down first, that I shouldn’t let emotions rule an entry.  And then as the day progressed, this post became fated for today.

We like to say there’s an eating disorder “community” on Facebook.  That we’re all fighting the same illnesses, fighting the same demons, fighting the same fight.  While we may all be fighting illnesses, we are certainly not a community.  We are a group of cliques, some divided based on treatment histories, some set apart because of one person’s not-so-great interactions with someone else and people jump to polarizing sides, some cliques based on geographic location, some on whether or not you are recovered, some are based on whether or not you are “real” (I have yet to understand this one).  Pick an issue, and there is a clique that will defend one side and a clique that will defend the other side.

Some people move from clique to clique.  Some people belong to more than one.  Some people are stuck outside of the cliques, miraculously.  But a community?  No.  We can’t claim that.

I was good friends with someone I met in treatment.  This individual was the first person who talked to me on the day of my admission; she sat with me through my first meal and my supplements and sat with me afterwards and talked to me about piano, dancing, volleyball, languages, and music and even though I was crying, she had me laughing.  We kept in touch after we left that treatment facility.  Sadly, she passed away three years ago, from her eating disorder, and there’s a Facebook group in remembrance of her.  Which I was a part of as of the anniversary of her death, when I left a message on the group’s wall.  I went to go look at the group today only to find out that I have been removed from the group.  The moderator has made it very clear that she does not agree with me on certain issues, one being my own recovery, and now I am no longer part of the community that knew this beautiful individual and strives to keep her alive in our hearts.  Somehow, my friendship with this individual isn’t even a reason for me to be a part of the group or not.  It’s the fact that the moderator and I don’t see eye-to-eye.  Admittedly, this actually made me cry this morning, because I had long ago unfriended the individual who passed away because of Facebook’s frequent suggestions to reconnect with her.  Seeing her profile constantly popping up and knowing I couldn’t reconnect with her no matter how hard I tried was too much for me.  But the community of other friends was helpful for me.  And I am no longer allowed in that community.

I am friends with people who have hurt other friends.  I get conflicting messages from all sides.  I get messages with people calling me various names.  I am recovered, and say this, so if I have a bad day that has nothing to do with eating disordered thoughts let alone behaviors, some people call me a liar or a hypocrite.  I sought more intensive treatment this past winter to avoid a full-blown relapse and when I got home was told I was in denial, that I was never recovered, that I’m still not recovered, that I’ve been lying, that I profess to support recovery but don’t live a life of recovery.  My comments on other people’s pages are held up to criticism if I happen to slip and *gasp* be human and say something that’s not 100% All American Nice Girl.  I am not allowed to make mistakes because I get called names, but then I also get called names because I claim to not make mistakes.  (This last one confuses me, because I have openly admitted to mistakes and follies here on this very blog.)

So let me clear something up about me:  I am human.  I am recovered.  I began slipping in January and had two weeks where I started using some eating disorder behaviors, but the main issue was that my head was nowhere near able to pull things together and I was scared shitless of relapsing because I know my heart could not handle it.  My therapist thought I could turn things around outpatient.  Maybe I could have.  But I wasn’t willing to risk that chance of getting worse before getting better.  So I took the advice I give other people and sought more intensive help. I left Rader on strong, solid footing and since, have not returned to any behaviors and had minimal desire to in the beginning and no longer have any desire to.  I am damn proud of myself for stopping a relapse before it happened.  So I’m sorry if that didn’t fit the Perfect Recovery Girl image you had of me.  But get this: I don’t know a single solitary “Perfect Recovery Girl” and I know a lot of individuals in recovery or who are fully recovered.  I make mistakes.  I say things I shouldn’t sometimes.  I don’t know everything.  I don’t profess to.  I make it clear that what I write here is my opinion. You are allowed to disagree with me, and I usually reply and take your comments very seriously and spend time thinking about them and have been known to change my opinion in this process.

If you disagree with me, fine.  I’m not expecting everyone to agree with me.  I realize I have strong opinions.  And I have strong feelings about what is right for me. I cannot tell you what your best course of action should be.  I can only offer you isights from my journey.  And I’ve repeatedly said that just because something has worked for me does not mean it will or should work for everyone.

I don’t know what to do about all the in-fighting on Facebook.  I want to stay as neutral as possible.  I try to watch what I say.  And when I slip up and am less than perfect, lots of people let me know.  I am in a position where I can be friends with people in all stages of recovery or illness and not have it affect my own recovery.  But I am conscious of the onlookers and know that not everyone is in such a place.

I’ll be honest.  I’m at a lost for what to do.  What to say.  Do I combine my profiles again and just let the drama unfold?  Do I try to protect my own private life while maintaining a decidedly public one of advocacy?  I refuse to choose sides.  Yet my refusal to choose sides has hurt people’s feelings.  And at the same time, if I did more actively choose sides, it would hurt more people.  I try to be honest in my replies to people.  People ask me to be honest.  Then I am honest and get slammed for it.  I sometimes feel I am in a no-win situation.  And I could easily remedy that by walking away from everything.  But I care too much.

So forgive me if I am frustrated at times.  Please acknowledge that no one is perfect.  Please accept that I will try to be there for as many people as possible, regardless of alliances or arguments.

I wonder what would happen if groups commemorating someone’s life were places where people could gather regardless of what clique they belong too and join in the one thing we all have in common: we lost someone we loved.  Can personal feelings be left out of the picture? Can we put aside our differences in the face of the one thing that will conquer us all in the end?  Or do we get to decide who is worthy or mourning and who isn’t?

What would happen if we had a place where it didn’t matter if you were recovered, recovering, thinking about recovery, not ready to take that step, or not wanting to take that step?  Is such a place possible?  Can one person respect another’s desire for recovery even if they aren’t recovered themselves?  Can we have a forum where someone who is pro-ana consciously makes the choice not to leave a pro-ana icon or message on a recovery forum and where someone in recovery refrains from going to a pro-ana group and berating those members?  Can there be a place where we accept each other for where we are, in this moment?

I WANT EVERYONE TO PLEASE TAKE NOTE OF THIS:

I had emailed the moderator of the group yesterday and we have messaged each other back and forth today, and through talking about it, have resolved not only the situation about the group, but our friendship as well.  I am so very thankful for this and please ask all of you that knew what was going on to respect all of the parties involved and just be thankful that in this situation, honest communication worked for the best!

July 21, 2010 Posted by | Communication, Eating Disorders, relationships | , , , , , , , , , , , , , | 15 Comments

the “dreaded” hospital

"In my place" by lifeinphotos deviantart.com

I dared address that awful word, “healthy”, so now I’m off to address another awful word: hospital.  I’m sure you’re all used to my “I don’t believe in sugar coating things” and “honesty” beliefs, but I am a little nervous about this post.  And at the same time, can’t wait for the private messages of astonishment and judgment.

I recently was discussing the concepts of “sick” and “healthy” and “deserving” with someone, and wrote the following in response (slightly edited for privacy reasons):

And could there be a part of you that feels like a “bad ED person” if you haven’t been IP in three years?  Like, “how the hell can I say I’m sick if I’ve not been in the hospital for so long?”  type of thing?  Is there a part of you that might want to go IP so that people know you are still struggling and need their support and help?   People have posted on my blog about how they don’t want to be a healthy weight because it somehow means they don’t need as much care and support.  I think the same would be true if I put up an entry about going IP.  Sure, we all hated being locked up and having restrictions placed on us, but at the same time, there was at least an outright acknowledgment that we needed help and were in pain.  I know that my last hospitalizations were not about this at all, that I went because I wanted help and was ready to take whatever action necessary to get better, but I do know that I went IP in my early twenties on general psych units for SI when I probably didn’t really “need” to but I sort of “wanted” to.  I hated going.  The locked hallways, the checks, the having my possessions taken from me, etc.  But at the same time it was comforting knowing that someone was taking care of me.  It has taken me a long time to realize that I can have that very same support and care on an outpatient basis, without using any behaviors.  That there are people who see that I am struggling even if there are no behaviors.  And I’ve gotten more help and care and support through using words than I ever did before.

I just admitted some things I’m not all that proud of.  I went IP not with the intention of getting better, but with the knowledge that I would be taken care of while there.  I also now realize, although I didn’t at the time, that going inpatient did signal to my friends and family that things weren’t going well and that I needed their support and care.  I’m not exactly proud of the number of my hospitalizations, and I wonder, now, if all of them were necessary.  But at the same time, I do acknowledge the fact that while I was inpatient, I was safe, protected from myself, if you will.  And that may very well have contributed to the fact that I am still alive and able to write this post.

I have noticed, both now and in the past (there really hasn’t ever been a day when I haven’t seen at least one post or status update about this), updates along the lines of “I wish I were back at X Treatment Facility”–rather than “I wish my insurance would get their act together so I could get treatment.”  There are different implications in each statement.  The latter implies a desire to get better, to do whatever it takes to get there, even if it means going inpatient.  The former may imply those same things, but the idea of missing a treatment center implies a lot more, things that the individual posting the statement may or may not be aware of.  Some of the possible implications: things were easier in treatment, I was supported while in treatment, I had attention while in treatment, people knew something was wrong while I was in treatment, my family actually took things seriously when I was in treatment, my family (or friends) actually acknowledged there was a problem while I was in treatment, I felt safer while in treatment, I felt understood while in treatment.  And there’s probably more that I’m not listing.

Please don’t think I’m judging anyone for any of these things.  I think they are all part and parcel of the eating disorder and recovery process.  There is this weird pull toward inpatient treatment because it does bring with it a certain status in the eating disorder community, and I have noticed that certain treatment facilities have more “weight” than others, that they carry a “you must really have been sick to need that” type of status.  Again, no judgment, but let’s be real and admit that there is a degree of competitiveness among people with eating disorders at the very same time that there is a degree of support and encouragement.  Forum boards are filled with “who has been where?” and “how long were you in for?” posts, as if these things determine how sick an individual is, when the truth of the matter is that it often has more to do with insurance than anything else.

Eating disorders are full of weird dualities.  I want to recovery/I don’t want to be “healthy.”  I want to recover/I don’t want to gain weight.  I hate being in the hospital/I wish I could be at X Treatment Center.  I want to be better/I don’t want to lose the eating disorder patient status.  I want to recover/I still want people to support and care for me and acknowledge my pain.

It’s that last one that really shouldn’t be a duality.  Recovery does not mean an individual is no longer in need of support, care, and encouragement and it certainly doesn’t mean the pain is gone.  Being bipolar, I’ve been in the hospital for severe depressive and manic episodes, and “getting better” (past that particular cycle) meant that I had found the right combo of meds and things were back on track.  Going in the hospital for an eating disorder meant giving up really comforting behaviors, gaining a new body, learning how to get my needs met in a healthy way, forging a new identity, facing all the issues that drove me to an eating disorder in the first place, and then coming out into the “real world” feeling somewhat naked and defenseless.  Sure, I was physically healthy, and at a good weight, and symptom free, but the journey of recovery had really only just begun.  More than while I was inpatient, when I was surrounded by people who “got it” and staff who were there to help me, I needed people’s support and encouragement because now I was expected to do everything I did inpatient on my own while faced with all those triggers that aren’t there while inpatient.

I think this has a great deal to do with why the pull of treatment centers is so great at times.  It is easier while in treatment in a lot of ways.  And people do take you more seriously then.  There is a direct acknowledgment that you are suffering and in pain and need help while you are in treatment.  And there is a general misconception that when you leave treatment, you are “better” and the crisis is over.

The immediate time after a hospitalization is the time most ripe for relapse because of this misconception.  You very well need the same degree of support and encouragement but may not yet have learned how to ask for it with words and not actions.  Showing pain is easier than describing pain and asking for help with words.  Asking for help is often a sign of weakness, or so we like to tell ourselves.

I’ve finally learned how to ask for help.  That I need to ask for help and support before the behaviors start, and not just from people online, but in real life.  There are friends I know I can’t go to for this kind of support; it’s not their fault and they aren’t any less my friends for it.  They are just not prepared to handle the way I may feel or the things I may think.  And I’ve learned which friends can handle what by a process of trial and error.  Which is sort of sucky, but I honestly don’t know any other way to do it.  And it takes a lot of guts to speak up and ask for help.  But I do have to say that once I learned how to ask for help, which at first I often did through writing and handing the writing to my therapist or doctor, once I learned to speak up until I got someone to listen, which admittedly took some time, things became much more rewarding.  Relationships became more real and honest.  Life became more bearable.  And I felt more in control.  And the pull of treatment centers became much weaker.

Let me make certain things clear: If you need more intensive treatment, do whatever you can to make it happen. That is not what this post is about.  I am also not saying it is “wrong” or “bad” to want to be inpatient, for whatever reason.  I honestly feel that is normal, but that it doesn’t get talked about openly.  I am saying that not only can you receive support and encouragement on an outpatient basis, but that you deserve these things.  That just because you are not in need of intensive treatment does not mean you are not in pain, that you are not suffering, and that you are not worthy of care. I am saying that words are your greatest ally, that part of recovery means using your voice to get your needs met.

If anyone told you that recovery wasn’t terrifying as hell, they are wrong.  It may very well be the scariest thing you ever do, the hardest thing you ever accomplish.  But I can also say that it’s the thing I am proudest of.

July 18, 2010 Posted by | Communication, Eating Disorders, recovery, therapy | , , , , , , , , , , , , , , , , , , , , , | 21 Comments

One year ago today

Me. Lily. Bonded for Life.

One year ago today, my parents were driving me home from the hospital in St Louis where the day before I had an Implantable Cardioverter Defibrillator implanted beneath my left collarbone, with a lead going into the right ventricle of my heart.  On the two-hour trip home, I had to ask my dad to pull over twice so I could dry heave on the side of the highway (those IV antibiotics were a bitch), clutching both hands to my chest, terrified I was going to open the wound or jar the ICD out of place.  But we made it home in one piece, with Lily, my ICD, still in place.

I have mixed feelings about Lily.  I am thankful she’s there, for she (most of the time) quells my anxiety.  She won’t prevent a cardiac event, but she’s my protection in case a cardiac event occurs, ready and waiting 24/7 to jolt things–literally–back into a nice sinus rhythm (hopefully).  I don’t mind the scar.  It’s almost invisible now.  I find it annoying to show security officials my card and explain why I can’t walk through security gates and why they can’t pass that wand over my chest.  It’s been a pain in the past couple months since I can’t have an MRI, which the doctors would have preferred to have as an additional diagnostic tool in the case of my knee.  And sometimes, when I’m walking around, the realization that I have a chunk of metal in my chest and a wire threaded into my heart is just damn weird.  But most of the time, I’m thankful.  And at least a couple of times a day, I find myself tracing the outline of the defibrillator with the fingers of my right hand, and a feeling of reassurance swells up within me.

The past year has resulted in a lot of lifestyle changes, and I’ve been somewhat anal about following my doctor’s orders and avoiding every known trigger that could set off an arrhythmia.  In the beginning of the year, I was pretty positive and got on the “let’s spread the word about heart disease” kick.  It took until this past spring for the effects of all that my cardiac diagnosis entails to hit me emotionally.  And when they did, they hit me hard.  I’ve gone through phases of relief, anger, thankfulness, confusion, bitterness, rage, grief, and sadness.  Followed by more grief and sadness.  And I struggled with the feeling of being broken.  All of these feelings coexist within me still, and I suspect they always will, and that certain ones will surface depending on what situation I am in.  But thankfulness and relief at knowing what is wrong are the strongest two emotions.

People thought my cardiac symptoms were just a result of the eating disorder.  I’m not sure how many doctors told me if that if I weren’t anorexic, my heart would be fine.  I had four cardiologists tell me that.  They did an EKG and wrote my symptoms off as a result of my eating disorder, not bothering to check for any underlying diseases, even after I had a Sudden Cardiac Arrest and went into asystole for 53 seconds.  “She’s just an anorexic” was what I heard that night in the ER.  My gut told me that something else was wrong, but I couldn’t get anyone to believe me.

And then I recovered from my eating disorder.  I still had cardiac symptoms.  One cardiologist listened to me, did some minimal testing and threw a couple of pills my way and pronounced me healthy.  I moved to MO for my PhD program, got mono and strep and the cardiac symptoms flared up in frequency and severity and I became an expert at fainting and blacking out, learning the sensations right before I faint and learning to fall away from tables and chairs and doorframes.  One cardiologist told me, after asking extensive questions about my history of anorexia, that I “shouldn’t be fainting” when I felt the weird heartbeats.  Completely ignoring the fact that I was fainting while feeling those weird heartbeats.

So off to St Louis I went, and found an amazing cardiologist who hardly glanced at my anorexic history, content with my answer that I was recovered and had been recovered and healthy for some time, and took my complaints seriously and investigated the cause.  One look at my EKG and my history told him what it was, and an MRI confirmed it, and now I have a new acronym on my MedicAlert tag: ARVD (Arrhythmogenic Right Ventricular Dysplasia), a genetic form of progressive, irreversible and untreatable cardiomyopathy.  I also have two structural abnormalities that may be getting worse as the ARVD progresses.  My doctor was honest in telling me that a heart transplant may be in my future, and that even if I don’t have a heart transplant, I may need a valve replacement and/or a patch for the hole between my two atriums.

I wonder what would have happened if the first cardiologist, way back when, believed me, and didn’t write me off as “just another anorexic” or “just another psych patient”?  I have no doubt that my eating disorder behaviors aggravated the ARVD, but I would have developed it even without the anorexia.  The signs were there before I was anorexic, but at that time I was a healthy, all-star athlete.  What could possibly be wrong?  (Answer: A lot of things that often go undiagnosed until autopsy.)  What if, after my SCA, the ER doctors had sent me to the cardiac unit and ordered all the tests they would have if I had been a 60-year-old male?  What if they hadn’t sent me home the next day with a reprimand for being anorexic and a command to drink more water?

Obviously, I can’t answer those “what if” questions.  No one can.  Maybe they would have found the ARVD.  Maybe not.  It’s rather rare, and usually takes someone who specializes in it to actually find it.  I’ve given up on the anger and bitterness at not being listened to in my personal case.  I have a right to be angry, but holding onto that anger won’t get me anywhere.  But I am angry that I’m not an isolated case.  That medical professionals seem to have this disregard for psychiatric patients in general, and eating disorder patients specifically.  There’s this general idea that if you have an eating disorder, that is the root of everything else, and that all you need to do is stop restricting or stop purging or stop over-exercising and you’ll be fine.

A) That idea, that all you have to do is get better and you’ll be fine, is so dangerous.  For one thing, it shames the patient a patient who already has a great deal of shame.  For another thing, not everything is caused by the eating disorder, and serious and life-threatening illnesses may be overlooked all because “she’s just another anorexic”.

B) So what if the problem is caused by the eating disorder?  People with eating disorders are known to have heart problems, a lot of which will go away once the individual is healthy.  But in the meantime, is it wise to ignore the problem and just wait for the patient to recover from the eating disorder?  Shouldn’t we treat the problem as much as we can, now, while the patient is alive?  Or is it better to mourn the individual’s death and say, “If only she hadn’t been sick, her heart would have been fine”?

I’m not saying that we shouldn’t encourage the individual to recover from his or her eating disorder.  Of course we should.  But we should also do everything to help him or her with dignity and respect.  Shame and derision have no place in the treatment of human beings, but that seems to be the status quo of too many medial professionals.

If you know, deep down, that something is wrong, and someone tells you that it’s all in your head or it’s just because of your eating disorder, don’t listen to them.  Listen to your body.  Seek another opinion.  Keep knocking on doors until someone believes you and is willing to listen.  Your life is worth it.

July 16, 2010 Posted by | Communication, death, Eating Disorders, health, heart | , , , , , , , , , , , , | 6 Comments