Surfacing After Silence

Life. After.

where the *@#&^ have I been?


I’d to to check back in with my faithful readers and let them know I was vacationing at a nice, sunnyside southern California retreat.  It was marvelous.  Relaxing.  Peaceful.  Warm. Sunny.

If only that were true.  But I will be in California in January–for the Jackie Bristow Memorial 5K.  Please visit this page and consider donating.  This is a family very dear to my heart.  I will not be running, of course, but I do have an awesome voice to cheer people on.  And if you are thinking about running, I please ask that you discuss this with your treatment team.  We would love to have you there supporting the organization, but we would like you to take care of yourself first.  Join me in the cheering section.  The race is in San Dimas.  I have no idea where in California that is really.   I’ve never been there before.  I hope it lives up to my expectations.

So where have I been?  Classes and the library.  The semester is over half finished (hallelujah!) and I’m ready for Christmas.  I’ve been sick, I’ve been shocked by my ICD, I’ve graded a lot of papers and translated a lot of Latin.

I’ve wanted to blog, but I haven’t been sure how to go about doing so.  I find myself confused, upset, frustrated at some of the things I notice in the eating disorder community online.  Sometimes I feel so powerless to change any thing–any small thing.

Honestly, I’ve wanted to throw up my hands and walk away, and I haven’t been saying much online because my mommy taught me that if I can’t say anything nice, I shouldn’t say anything at all.  But that feels so hypocritical, because I’m here, on the other side, seeing some things I went through and understand and some things I just don’t understand, and I know I was once “there.”  But one of the things I’ve tried to do in this blog is be honest.  So here it goes.

I wish I could stop the cross-postings that go on between the people returning to treatment and posting from treatment and then when the get back from treatment and all of the people leaving all these positive comments about “how this will be the last time” “you can make this work” and “i’m sooooooo sorrrrrry is there anything I can do?” and the really confusing “don’t let them get to you.”  Them being the treatment team at the hospital.  Because, of course, treatment teams are out to get their patients and make their lives hell.  (please read sarcasm there)

Yes, this umpteenth hospitalization could be the one in which things “click” and changes are made.  But here’s the kicker: I’ve seen people get better after going to one of the worst god-awful treatment centers in the united states (I was there and it really is hell and if you know what place I mean, please don’t comment with the name because of the fact that I have known people to get better there).  I’ve also seen many many many people bounce around between some of the best facilities in the country–inpatient, residential, IOP, transitional living–and it’s always “the place sucked” or “staff sucked” or “the rules were crappy” or “the food sucked” (that one makes me laugh) or “they didn’t know what they were doing.”

We’re the experts on being sick.  They– the treatment professionals – are the experts in helping us recover.  And of course the rules suck, but if we didn’t need the rules, they wouldn’t be there.  And the place sucks–who wants to be in treatment facility?  And “staff sucked” and “they didn’t know what they were doing” are really just ways of saying, “I didn’t want to listen to them.”

A friend of mine told someone I had been to SP and recovered.  And that someone said, in a very negative manner, “well she must have really wanted to get better.”  (I’m not sure if this was meant to be an insult to the place or me or what.  Or an excuse for themselves.)

Yes.  As a matter of fact, I did want to get better.  I wanted it so much that I listened to my treatment team–sure I cried and whined and yelled–but I did what they told me.  My way had never worked.  It hadn’t even ever helped the situation.  So I decided to try it their way.  100%.  And I found out that if you’re willing to work with them and be honest and trust them, they are more than willing to work with you.

Sometimes I want to post as a comment to a status update of “going back in again” and have it say: “we all saw that one coming awhile ago.”  I’ve stopped giving the platitudes of false optimism:  You can do it!  You are so brave! Don’t give up!  Not to everyone.  Some people I know are really throwing everything they’ve got into recovery, using every opportunity they have to get better and fight.  But some people are not there yet.  I have no magic words to shake them out of it.  I have no anecdote that will make them wake up and smell that coffee they live on (with splenda).  Because I was there.  And it took almost dying for me to wake up.

This is a rambling post.  But this is my point:  bouncing from treatment center to treatment center not only affects you, it affects every single person around you, both in real time and online.  Don’t ever fool yourself and think you are in this alone, that your actions have no repercussions.  I used to think that.  And then my friends got tired.  They got scared I would die.  They felt powerless to help.  They ran out of words to say.  And they left.

Early in my recovery, every time I heard of another person I was in treatment with who relapsed and went back in the hospital, it took some of my hope away.  How the hell was I supposed to recover if no one else could?  How could I turn to them if they were fighting to stay alive on a very real level?  And every time someone went back in the hospital, I was jealous.  I’ve written about this before.  The pull of the hospital.

Now?  Every time I hear of the endless cycle of admissions and ER visits and fights with treatment teams, I wonder how long that person has to live and I wish I had the power of words to make them believe in and choose life.

And yes.  It does come down to a choice.  We did not choose this illness.  But, even if you are forced into treatment, it is always your choice to recover.

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October 30, 2010 - Posted by | Eating Disorders, feelings, recovery | , , , , , , , , , , , , , , , ,

18 Comments »

  1. WOW. Yes. Thank you for that. I have thought the same things before, and never said it. No, I’m not fully recovered, but I’m doing incredibly well at it and WANTING it. Trying for it. I think you addressed something big that comes along with eating disorders: wanting to stay sick. Not just not being sure you want to get well, but actively wanting to stay sick. BIG thing, this, and something that I think every eating disordered person goes through sometimes, but there is a point when it isn’t so much of the eating disorder keeping you sick: its yourself. Sometimes I get so frustrated with ED’d friends who go back again and again to treatment, and never seem to actually try to recover. Well, I’m babbling and there is much more to it, of course, but I agree with you.
    And I hope the 5K goes well. Even not running in it (or maybe especially not running in it) it’ll be something incredible.

    Comment by Sarah | October 30, 2010 | Reply

  2. Wow ALEXIS I LOVED THIS POST. It is so damn true. I had to defriend a few people because I realized that it was only detrimental to my own recovery and health to hear about them going back in and out of treatment facilities. I almost feel like the new “trend” in the ED community is to act all positive about going into treatment and then once getting out appearing all happy and ready for recovery (which always makes me suspicious anyway because truly who is REALLY HAPPY TO HAVE GAINED 20 pounds or merely have to get rid of their eating disorder in the beginning). I mean I understand the honey moon effect but I swear that people are posting new pictures of themselves once they get out of treatment merely to document their journey in and out of treatment centers an so that later on people can compare how “sick they have gotten” yet again after leaving. Maybe that is too pessimistic, but I honestly cannot take it and so I have done what you have done and just said NOTHING AT ALL instead of being mean but I am so glad I am not alone in that frustration. And as you said, when I first got out of treatment and saw everyone going back in it did make me feel less hopeful about my own possibilities for true recovery and even in the place I had been- if so and so did not get better than was that place really helpful? What does that mean about myself? yadadyadayada. Granted I understand that was my interpretation but I do believe that some people need to stop with the going back in and out of treatment posts and those that COMMENT on their status’ are only feeding into the cycle. Feel free to delete this comment maybe this was too mean but I just read this and it really struck a nerve. I am tired of this “False positivity” that seems to have taken over some of the ED community.
    In addition, maybe later you can do a post (I know you have super busy) about how actions speak much louder than words. I am so tired of people with the positive quotes and posting it on everyone else’s walls yet they are taking sick pictures of themselves and putting an awkward collar bone shot of them on their profile picture. I am sorry, but you can’t just talk the talk you must walk the walk and if you think that those of you around cannot see that- you are only fooling yourself. Sorry for this rant!

    Comment by Jessica | October 30, 2010 | Reply

    • “they are taking sick pictures of themselves and putting an awkward collar bone shot of them on their profile picture.”

      I know exactly what you mean. It really disturbs me when people post pictures of themselves claiming that they are showing off their new clothing when in fact they position themselves so they “accidentally” reveal their collar bones, etc. But what disturbs me even more are the responses people post – they comment “please be careful”, “you look so ill”, etc., which only feeds (for lack of a better word) into the disorder – and while people without EDs may not understand this, I think that people in the “ED community” should know better than to post those kinds of concerned comments. I have actually commented in the past with “Is it actually helping you to post these pictures?”, although I’m not sure if anyone pays attention to those kinds of comments.

      Comment by anon | October 30, 2010 | Reply

  3. My caffeine deprived brain can’t quite form the thoughts I wanted to express here.
    ” Don’t ever fool yourself and think you are in this alone, that your actions have no repercussions. I used to think that. And then my friends got tired. They got scared I would die. They felt powerless to help. They ran out of words to say. And they left.”
    people really need to grasp the truth of this… but then, i think for some of us, it’s not until we’re almost entirely alone that we find the strength to stand and fight for ourselves.

    oh, and San Dimas is where Bill & Ted came from.

    Comment by marisa | October 30, 2010 | Reply

  4. Wow, all of this is so true. I was especially struck by the whole wanting to post “well, we saw that one coming” instead of pretending to be so sorry and shocked. Especially on fb, there are several people who say that they are headed to treatment in a status, and my first thought is, well its about time. And I know this is just a personal thing for me but it gets to me when people post things either from home or ip that “ughh my team is sending me to this place” or “such and such a place in my future?” Or “get me out of here there is no way in hell they can make me go.” I’m partly just bitter bc my insurance is horrible, but honestly, is it necessary to broadcast and then complain that you are literally being the opportunity of a lifetime to go into long term treatment at a renowned tx center at NO cost to you and then turn it down. I feel like sometimes I just want to say that if you don’t want to go, I’ll jump at the opportunity to take your place.

    Or statuses about being injured or sick as a result of your eating disorder and then following that status minutes later with another one reporting that you are going for a run/ going to the gym. And then acting all shocked that the injury got worse?!? I mean seriously, I know some people aren’t ready to recover but there is no need to show how you are being all “cool and rebellious” by sneaking out for a quick run. Nobody thinks that’s cool (unless they are in the same place you are) and it is CLEARLY just a cry for attention. They’d be better off just making there status “I’m exercising against the advice of my doctor, please tell me how sick I am and how worried you are about me. I want attention.” I could prob write a novel about this so I’ll stop now, but very well written and relevant entry.

    Comment by Katie | October 30, 2010 | Reply

    • Wow…I really appreciate this comment, especially the part about what their statuses should REALLY say. I just really agree with a lot of your thoughts here, and partially wish I could post those thoughts as comments on people’s walls when they write the stuff mentioned

      Comment by CM | November 6, 2010 | Reply

  5. Sing it, sister! It is easy to fall in to the trap of the platitudes. I think that working in the ED community has helped me drop that. I know now that it doesn’t do many people much good to hear them in the long run, and I am a lot more sensitive when I hear them coming from other people.

    Comment by Rachel | October 30, 2010 | Reply

  6. Thank you for this post. You always seem to put into words what so many people think, but are afraid to say.

    While we aren’t responsible for people’s posts about how ill they are, or pictures showing how much weight they lost, I have noticed that in general (I’m not saying all the time of course), those kinds of posts generate a lot more comments than the healthier posts about going to the mall with a friend, etc., which I think gives them the impression that people only care about them when they are ill, and that when they become healthy, they’ll be abandoned and ignored. While it’s ultimately the responsibility of the poster to think before they post, I think we should also think before we comment, and ask ourselves what helps more in the long run. I always wish I could find the right words – the “perfect” comment to post -but I’ve been on the “other side”, where I wasn’t motivated to get well, and nothing anyone said could help me, b/c I was unwilling to hear them.

    Comment by anon | October 30, 2010 | Reply

  7. I actually don’t think that encouragement to get well to others is universally negative. I also know that when I read about others going back into the hospital, I think “thank god that’s not me,” (i.e. certainly NOT jealous), and use this knowledge as an incentive to further get well. I’ve been on both sides, and it has been nice (for me) to know that I have had people rooting for me. On the flip side, I also like to root for others, as I know recovery is SO doable.

    Comment by Emily | October 30, 2010 | Reply

    • I did not say that the encouragement to get well is universally negative. I even said that I give encouragement to people. But I did comment on the cycle that is being perpetuated in some circles of posting debates of going inpatient and planning on not listening to the team once they get there and all “you’re so strong” comments that appear to be feeding into the cycle.

      Comment by surfacingaftersilence | October 31, 2010 | Reply

  8. OMG!! This is such a fantastic post! My feelings are mirrored in your words. I just spent 10 days on a cruise ship with a dear friend I met in an ED support group. For months prior to the trip another friend or her’s and I kept trying to coax her into recovery and healthy eating. Up to the last minute before the cruise left her doctor had her “On a tight leash”. She made it sound like it was a good thing to be on a tight leash implying that being in recovery or working towards recovery was a bad thing. I have been in active recovery for the past 4 yrs and prior to this trip didn’t realize what an impact my actions while I was ill had on other people. I was able to watch this friend from the other side of the proverbial coin as she starved herself and slept most of the cruise away. I am at a turning point in my own recovery where I’m seeing that I need to take care of myself and guard my mind and soul. I am having to cut ties with friends I have made throughout my recovery journey because it is just not healthy for me to watch them go from one treatment to another and fight against their treatment teams as if they were the enemy. My mindset has changed. I am still willing to help those that truly want the help but I can’t idly sit by and watch someone kill themself with their choices.

    Thanks once again for such a thought provoking commentary!!

    Comment by Harry | October 30, 2010 | Reply

  9. While I agree that multiple ED related statuses/posts make me want to throw my hands up as well, sometimes they’re also a cry for help. I know when I’ve updated that I was going back in, I’ve wanted people to come to my rescue. I wanted people to know I was struggling and I was lost.

    However, bashing staff/centers or making smart remarks about getting around the system is a whole other thing. A lot of “friends” give support to that because they don’t want to upset the person who’s sick. Luckily, friends I know from treatment are not like that.

    Going back to treatment is a weird situation. I don’t think we WANT to be sick, necessarily, because it sucks! But the place and people are comfortable and familiar.

    Comment by Jen | October 30, 2010 | Reply

    • going back to treatment IS a weird situation–and I’m not saying that people who need to get help shouldn’t go. I think that if you are sick and need treatment, you should get treatment. Even if you don’t want to go. It keeps you alive, so that maybe you will get to a point where you do want to get better.

      I’m more concerned with the comments people leave that help keep the individual stuck where they are.

      Comment by surfacingaftersilence | October 31, 2010 | Reply

  10. everyone takes their own path to recovery. and not everyone makes it out the other end. my best friend is slowly killing herself and i have to watch it knowing nothing i say can change it. it’s devastating. but i’m sure ppl felt that way when i was sick….when you were sick…. it’s so frustrating watching ppl destroy themselves but we really can;t change them…

    Comment by rivka | October 30, 2010 | Reply

  11. I know people felt that while I was sick. That’s why I wrote that a lot of them left and never came back. I wish I had words that could help people see that there is another side, that there is a way out.

    Comment by surfacingaftersilence | October 31, 2010 | Reply

  12. Alexis,
    I wanted to share, and wonder now if you read, this blog with you:
    http://www.eatingdisordersblogs.com/spirituality/
    There are so many parallels between theirs and yours (that is intended only as a compliment). Thank you for using your voice; thank you for doing so despite and even naming the struggle to do so. It means a lot to me.

    Comment by Maggie | November 3, 2010 | Reply

  13. When I was in treatment at SP I could see the different places that the many patients were in. They ranged from:

    My mom made me come here and I’m going to do everything I can to keep this disorder alive. In fact, this is kind of fun, like a giant slumber party. (Sadly for a few I saw, it may have been the most supportive and safe environments they’d experienced in a while).

    Then there were many patients who were in the mindset of: I guess I want to give this disorder up, but then again, I like the control it gives me, and I like being thin. Maybe I can just compromise somewhere in the middle.

    And then there were also patients who had taken time off of work, left their families, and forked out a lot of money to be there because they REALLY wanted to recover and just were not able to do it on their own.

    And of course, a hundred other situations that everyone brings with them to this crazy mix of people put together to live out this experience together.

    I have no idea how this connects to your post, but I know how you feel. I feel the same way and I often have to distance myself from reading the posts of friends who just aren’t ready to commit to recovery yet. It’s just too hard on my heart.

    Comment by Alex | November 5, 2010 | Reply

  14. As someone who is currently in treatment & working very hard to get better, even though I often am not sure I want to, I very much appreciate everything you have said here. Especially feeling scared that the person writing these things IS going to die. I get tired of reading all the comments and all the refusals for treatment and all the pictures and alllll the “oh my God you’re so sick!” comments. I am so glad you wrote this post…it’s really nice to know I’m not the only one experiencing this and these thoughts. I wish I could express more thoughts…but thank you.

    Comment by CM | November 6, 2010 | Reply


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