Surfacing After Silence

Life. After.

To The Bone fits my reality almost perfectly.

“I had an eating disorder, and To The Bone Got it Almost Entirely Wrong”

Author, Lucy Kelly: “The new Netflix movie is a remarkably tone-deaf and insight-free depiction of anorexia nervosa.” 

I thought To The Bone finally depicted someone struggling with the terrifying choice of anorexia versus recovery.  To The Bone is reassurance that other people have lived my story and other people had the same fears as I did and that other people took years to make the choice to recover.

Yes, this post will discuss anorexia symptoms–my experience with various symptoms and treatment.  At no point will I make the claim that my experience is everyone’s experience–or even that it should represent the majority of people with an eating disorder.

As advocates for mental health awareness in general and eating disorder awareness specifically, we bemoan the fact that not enough media accurately portrays eating disorders, that anorexia is glamourized or romanticized and that society doesn’t understand that anorexia has a mortality rate of 20%.

Then there comes a movie–that is fiction (and she makes a point to call this a fiction, not a documentary/memoir) , but based on the writer’s personal experience–and now people are pissed that it isn’t accurate enough, and that it’s not representative of all people who struggle with an eating disorder.

We ask for reality and then bitch when we’re given that reality.  Does anyone else see the inherent conflict of this statement?

No one story will ever be representative of the majority.  And if we want to keep saying that each individual’s story is unique, we can’t expect one story to work for everyone.  Articles and blogs such as the one I have linked to are now complaining that her story didn’t represent their story.

But–it was nice to finally see this story represented in media.  This story is strikingly similar to my story. If we want people to understand the harsh realities of  eating disorders, tell them to watch this film, because I’m having problems seeing this as ‘romanticized.’ It certainly doesn’t paint a pretty picture.

The seven patients are male, female, black, white, straight, gay, bi, and have anorexia, binge eating disorder, bulimia, and exercise addiction.  This isn’t supposed to represent typical treatment centers, but in one inpatient treatment center, there were only three of us in the eating disorder treatment.   The idea is that it isn’t traditional at all.  The main character faints while waiting for a bus. She’s forever huddled in several layers of clothing in an effort to stay warm and hide herself from sight.  She forces herself to do sit-ups in bed because she is terrified of life without sit-ups. Another patient keeps a smelly paper bag under her bed to throw up in when no one is watching.  A pregnant patient loses her baby due to complications from the eating disorder.  The token male dancer had to stop dancing due to injuries–that are a result of the eating disorder, and he finds during the movie that he will never be professional dancer again because his knee is shot.  One patient is forced to have an NG-tube and struggles to accept how many calories being pumped into her.  Which of these stories present an eating disorder as a beautiful way to live?

ached to tear the NG-tube out.  The only reason I didn’t?  My doctor said he would just put another one back in, and that this time I’d be on a one-to-one on a medical unit on bed rest, and I figured (in my obsessed brain) that at least I could burn off a few calories by walking from the dining room to the living room, where we had to sit. All. Day. Long.  I kept a chart tracking exactly how many sit-ups, push-ups, toe raises, squats, etc. I did every single day.  I would not go to bed until I finished all of those exercises–in addition to whatever running and walking and biking and swimming I had done earlier in the day.  I timed how long I stretched my hamstrings–and kept a chart of all of my stretches too.

We say that media only contributes to the stereotype that only very thin people need treatment.  This film only has 7 patients, true–but some are emaciated, some are thin, some may be overweight (from a health perspective).  Some are athletic.  Some aren’t.  Yet all of them are getting help.

This film does not cater to people wanting numbers of any type.  We only have a few shots of Ellen, the main character, in anything but layers of clothing.  We don’t see her weight.  We don’t hear her weight–either her current weight or how much she’s lost.  We don’t see sizes.  There is one calorie reference.  We don’t even know how many sit-ups Ellen does every day.

As for how the film represents families trying to deal with or understand their loved one’s struggles with an eating disorder?   The sister voices her anger at not having a real sister, only an illness standing in for a sister.  The parents and step-parents struggle to understand and support their daughter and really have no clue how to do so and, even if they did, they’re exhausted and wish they could just forget about it.  If you want to say that parents do everything they can possibly think of to seek help or to read up on a diagnosis and possible treatments or providers–be thankful you can have that viewpoint.  I don’t.

This film doesn’t wrap things up in a nice, neat plotline.  We don’t dive into all the myriad ways someone might develop an eating disorder.  And the patients don’t simply get to the treatment center, get help, and get better.  In fact, the ending simply shows her deciding to really give treatment a chance–without the happily-ever-after conclusion Hollywood loves.  Ellen has had treatment–and then relapsed.  Over and over again.  Which is kind of what my story was.  Hospitalizations that I was not invested in aside from keeping my doctors from committing me.  Discharge, relapse, readmission.  I can’t be the only one with this plotline.

Ellen is terrified.  Of recovery.  This is what we don’t want to speak of.  We want to think that people get sick and want to get better.  But what if you’ve been sick for so long you’ve forgotten what not being sick is like?  What if you’ve been told by multiple treatment providers that “once an anorexic, always an anorexic”?  Life without an eating disorder is the unknown territory that could be beautiful and fulfilling, but it could also be horrific and painful and terrifying.  Terrifying enough to paralyze you.

The repeated hospitalizations did one thing–they kept me physically alive until I hit my particular rock bottom and made the decision to recover and to actually participate in my own treatment.  At the time, I probably would have said I wanted nothing to do with whatever life was.  Now?  I’m glad people forced my physical body to maintain enough health that I survived.  Now?  I’m glad I hit rock bottom and scraped my way back up to somewhat level ground.

This movie will trigger a great many people.  Some people will watch this movie for that very reason.  They want to get tips and tricks to be sicker.  This film won’t give out a lot of tricks.  I’m positive that a lot of people have already printed out pictures from this film and pasted them on walls and in journals as “thinspiration.”  However, I don’t think any representation about eating disorders could not be triggering.  The people who will stare at these images will find inspiration in any movie, any television show, any magazine, any fashion runway, any fitness program, any gym.  They will see someone who is frail from chemo treatments as desirable.  They will see pre-pubescent children as ideal.  They will look at Olympic weight lifters and think that body type can be had by every citizen in the world.

What are some other things you will see watching this film?  How difficult it is to navigate relationships when you or the person you care for are ill.  Family, friends, romantic interests–all are affected by an eating disorder.  How recovery is not a simple process of finding a treatment center and forever moving forward.  How no one can make you recover unless you want to recover.

This film may not be representative of your reality.  But the article I linked to above doesn’t represent my reality.  There is no one reality, no one story.  Perhaps that is what people need to see.  Sometimes, stepping outside of your comfort zone and exposing yourself to alternate realities really is the best course of action.

 

 

 

 

 

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July 21, 2017 Posted by | addictions, bipolar disorder, Body Image, Communication, coping, depression, diversity, Eating Disorders, exercise, family, health, identity, images, inclusiveness, movies, publicity, recovery, relationships, thinspo, To the Bone, treatment, triggers, weight | Leave a comment

My Recovery=My Responsibility

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Since I wrote my previous blog post, “To the Bone” has continued to stir up controversy and anger.  Project HEAL, an organization that supports eating disorder recovery, has fielded a lot of angry questions about how the organization could be on board with a project that is potentially triggering for people with eating disorders.

In addressing the potential for triggers, their cofounder writes, ““Eating disorder recovery was the most challenging journey in my life, and in the early stages, I was triggered by many things—friends from treatment, diet talk amongst peers, stepping into a gym, and seeing very underweight people. I had to understand where I was in my journey and avoid those triggers. As I progressed in recovery, I was able to be around those triggers, and now, facing them solidifies how strong I am in recovery and how I never want to go back. I hope that our community can keep this perspective in mind when carefully evaluating whether to view this film.”

One of the most difficult things in my own recovery was acknowledging, and eventually accepting, that other people aren’t responsible for my behaviors.  Although I wasn’t triggered by seeing underweight individuals, I was triggered when my friends would talk about exercise, especially about running.  Sure, it would have been nice if the whole world stopped talking about exercise; then I wouldn’t have had to face the negative consequences both negatively idolizing and obsessing about an activity that other people enjoyed.

What was worse than talk about exercise, though, was the actual act of eating.  Meals, snacks, coffee house trips–all had the potential to bring up bad memories and connotations.  But I kind of had to eat, and I kind of had to eat and drink around other people.  If I had chosen to eat in isolation, I would have been giving in the distorted thoughts in my head that made me miserable.

So did I grab a whole bunch of friends and invite them over for a feast that rivaled Thanksgiving dinner?  No.  I started by eating meals with a close friend or family member at somebody’s house before I went out to eat in public and chaotic restaurants.  With peers and colleagues, I went to grab coffee with them before saying, “hey. Let’s grab some lunch before our workshop.”  As I felt more and more comfortable, I gradually began to expose myself to other difficult eating situations.

The same happened with exercise.  I didn’t just jump right in to discussions about someone’s specific training schedule, but observing my friends discuss exercise helped me see the positive and healthy role exercise played in their lives.  I didn’t go from not exercising for a whole year to training for a competitive half-marathon.  I had to learn how to approach exercise in a completely different manner than before, and I did so gradually.

During recovery, especially the early stages, I had to make some very difficult choices.  I had to ask myself what would be upsetting and potentially triggering and what would be upsetting and uncomfortable and what would be upsetting but okay.  And what would bring me joy.  At first, I did choose not to engage in some activities for my own well-being.

I do that still today, and this extends far beyond food and exercise habits.  If I know an upcoming event will be lots of people talking and laughing in a rather small room that amplifies all the chaos, I have to decide ahead of time whether or not I want to go, or if I want to go for a short time and then leave.  I find that when I am physically exhausted or under a lot of stress, my social anxiety flourishes, so I take into account all aspects of my health.

And there are times that I have no other choice but to walk into a room full of chaos and act like my brain isn’t sending me millions of messages that tell me to run and not look back.  But because I have learned to take care of myself, and because I have learned new coping skills, and because I have learned how I react in different situations, I know I can face upsetting environments without being tempted to use unhealthy coping skills.

There are shows and movies I choose not to watch because they are too close to home.  I cannot tell other people what to read or watch or listen to because it is triggering for me.  I am responsible for my own actions.  If I choose to watch something that I know will be more upsetting than I can deal with, I am responsible for my state of mind afterwards, and I am responsible for any and all actions that could result from that state of mind.

A movie itself is not responsible for my mind state.  Upsetting thoughts and emotions arise from a seemingly endless number of situations and images and words and people.  But thankfully, thoughts and emotions do not “make” me do anything.  What I do, I choose to do.

 

 

June 28, 2017 Posted by | addictions, bipolar disorder, Body Image, coping, depression, Eating Disorders, exercise, family, feelings, guilt, health, identity, images, movies, progress, recovery, responses, To the Bone, trauma, triggers | Leave a comment

13 Reasons Why

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Okay, so I will join the great online debate over the book Thirteen Reasons Why, which has led to a television show.  I have read the book, but I have not seen any television episodes.  Most of the online discussions have centered on why people shouldn’t watch the show, how horrible a person Hannah is, how it will only encourage teens to commit suicide, and how it’s just “another mental illness book” that doesn’t actually confront anything.

I read the book when it first came out.  Although the writing wasn’t the best and the plot was contrived, I was glad it was written.  A teenager voicing her feelings and thoughts regarding what led to her suicide.  No, I do not agree with leaving thirteen tapes behind that nit pick and blame other individuals.  Her suicide was her decision.  She had full agency.  No one made her kill herself.

But . . . what the book shows is that suicide is anything but a simple decision resulting from a single bad day.  No, her friends didn’t make her commit suicide, but their behaviors contributed to how she felt.  Imagine if she had been able to voice what she was feeling in an open and honest manner while she was alive.  That’s what we should be focusing on.  This book exposes the truth that people suffer in silence.

You may say that with all the options out there now, there was no reason she had to suffer in silence.  Have you ever been a teenager and known something wasn’t “right” but you had no idea where to go or who to ask or even how to put the idea that something isn’t right into actual words?

Yes, there are options.  More than before.  But they still aren’t easily accessible for youth.  There is still so much judgment concerning mental health and mental health treatment.  So maybe Hannah was cruel in leaving those tapes behind, but she was still suffering and she still felt completely alone.

As a suicide survivor, to pass judgment on Hannah’s character and actions would be hypocritical.  I’ve been her.  I didn’t leave people tapes and letters, even though I had something I wanted to say.  My attempt was my decision; no one else is to blame.

I am grateful I’m here to write this.  Most days.  The chilling nature of Bipolar Disorder is that I know it doesn’t leave.   We have found a treatment that has proven most beneficial, and I have learned a zillion more ways to cope, but I still go through dark spells and I still make mistakes.

As for this book making suicide look trendy–we’re blind if we say that society hasn’t experienced this before.  The Bell Jar;  Girl, Interrupted; and Prozac Nation are the first three books that pop into my mind.  The harsh truth is that teenage suicide existed before, it exists now, and it will continue–even if no one watches this show or reads this book.  Maybe instead of discussing Hannah’s character flaws and how it was unfair of her to do what she did, we should discuss what it is in our  society that creates real-life-Hannahs every single day.  And then maybe we should discuss how we could create a new environment, one with less judgments and less isolation and more forgiveness.

April 20, 2017 Posted by | addictions, bipolar disorder, Body Image, Communication, coping, death, depression, Eating Disorders, family, feelings, guilt, identity, Mental Health Parity, progress, publicity, recovery, relationships, shame, suicide, therapy, trauma, treatment | Leave a comment

Whatever You Want

JUST TRY HARDER!!

If you wanted it bad enough, you’d have it by now. All you have to do is try. It’s easy once you decide to really go after it.  Give yourself some credit and just do it already! 

Anyone else hear these, or similar, sayings while struggling with an eating disorder or addiction or trauma or depression?  Or life in general?  I *think* they’re supposed to be motivational. How many people actually find words like this motivating?  How many people feel guilty after hearing words such as these?  I’ll raise my hand to the latter.

I’ll admit, those early hospitalizations for the eating disorder and self-harm—I didn’t want it.  I had no intention of wanting it.  I had every intention of following the program’s rules in order to be discharged so I could go home and get back to the weight I was before admission.  I was there because my treatment team told me to go.  I played nice so I could avoid involuntary commitment.

Then there came the stage when I began considering recovery.  I began wanting it.  I knew people in varying stages of recovery, and I was starting to see just how miserable the eating disorder was making my life.  But at the same time, I began to notice how difficult recovery was.  How many daily choices I would have to make to stay on that path.  How exhausting those choices could be.  How exhausted I would be.  And how terrifying everything in front of me was.

I wanted recovery.  But I was already exhausted and frightened and overwhelmed.  How was I supposed to take on even more exhaustion, terror, and change?  I really had no faith that I could do so.  I mean, I had an eating disorder.  How strong could I possibly be?  How could I be strong enough to overhaul my life?  I knew how easy relapsing after treatment was.  Fighting that felt like too much for me.  So when I heard someone say “You just have to want it”, I felt like a total failure.  I thought that I obviously didn’t want it enough, or else I would be choosing recovery.

Yes.  I think you do have to want it.  People can’t make you recover.  They can force you to eat and gain weight and they can monitor your diet and when you use the bathroom and how much you exercise, but that can only last so long.  Eventually, it will come back to you again.  And if you don’t want to change, you won’t change.

But desire is not enough.  If you are so exhausted and physically compromised that you can’t think through the decision of what movie to go see, how can you be expected to make a serious life decision?  If you really do want recovery but have absolutely no idea how to even begin walking that path or whom to talk to or where to go, how can you be expected to “just” get better.  And if you know you want a better life but don’t honestly believe you have an eating disorder, how can you choose not to have one?

Sometimes, someone else will have to step up and make decisions for you.  They may have to force you to go into treatment.  A doctor may have to initiate involuntary feedings.  And you may hate those people and be angry and bitter and swear you’ll never talk to them again.  But because of these people, you will have a chance to regain enough strength and mental clarity to make the decision for yourself.  And even then, you may well need those same people to help keep you on that path of recovery.

After I choose to recovery, I didn’t immediately begin eating 100% of my meals and calmly sit in the hallway afterward without yearning to get up and pace for hours to burn all of that food off.  I struggled against my treatment team.  I tried to “make deals” with them to get out of certain parts of health.  I was confused as to why they were demanding so freaking much out of me.  I wanted to get better, but I just didn’t want to put forth the required effort.  For a while.  Then I began *gasp* working with my treatment team and making choices for myself that supported a healthy lifestyle.  And after I regained enough strength, I found that it was easier to make those daily choices to recover than to make the choices to relapse.

If you are at that stage of wanting it but are completely exhausted and don’t know what the hell to do, tell someone else and tell them you need their help because you can’t do it by yourself.  And then resent that person with all your heart as they help you get to the point where you can thank them with your life.

January 26, 2017 Posted by | addictions, bipolar disorder, Body Image, Communication, coping, depression, Eating Disorders, faith, family, feelings, guilt, health, identity, progress, publicity, recovery, relationships, self harm, shame, therapy, trauma, treatment | Leave a comment

The Inevitable Holiday Post

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To state the obvious: the holiday season can be difficult for a lot of people, regardless of any diagnosis or history of diagnoses.  It’s just plain stressful.

I love going to visit my brother and sister-in-law—I get to see my precious nephew and niece, after all.  And I love catching up with all of my in-laws, whom I simply refer to as family.  I like waking up to kids squealing when they see the presents under the Christmas tree and relaxing with family the rest of the day.

However much I love my friends and family and love spending time with them, I remain an introvert.  This does not mean I don’t like spending time with people or socializing—it just means that doing so tires me out as much as running ten miles used to.  This is when the anxiety heightens, simply because of the exhaustion, and then I start feeling trapped—the old “the walls are closing in on me” feeling—and wishing I could disappear.  The stress mounts until I force myself to emotionally numb out and present a much-practiced Smile Face for people.  In the past, this would inevitably lead to dangerous coping behaviors, and that would lead to guilt and shame, even if no one else knew about it.

I still feel all those feelings, but now I have a choice as to how I respond.  I could still give in to those old urges, but I know that’s not really want I want for myself.  Instead, I’ve learned that when I first start feeling that panic creep up on me, I give myself an break.  I find space and silence and retreat for a few minutes.  Sometimes for more than a few minutes.  I simply rest in the silence.  I inhale slowly, feeling my ribcage expand.  As I exhale, I picture all the tension in my body flowing out, and I let my shoulders relax.  I notice the solidness of the chair I am sitting on, or the floor beneath my feet.  I ground myself, thus healing the anxiety before it has a chance to overcome me.

Usually, I return to any festivities going on, but there are times I don’t.  Times when I am simply too overwhelmed and I know that immersing myself in a room of people and noise will be too much.  My family and friends know that this is not a comment on my feelings for them and that I’m not tired of them.  I am simply tired, and for my own health, I need some me time.  They’re a supportive bunch and don’t judge me.  They are glad I am learning to take care of myself and finding ways to stay healthy.

This list has some good ways to take care of yourself on stressful days.  I love writing To Do lists, because when I cross something off that list, it feels wonderful.  There are days when crossing off “check work email” is an accomplishment.  I make my bed every day—not to accomplish anything, but because I love the feeling of crawling between two smooth sheets when I go to bed.  I prefer baths over showers, and making myself put “real” clothes on does feel good.  If you choose exercise, please do so keeping your health in mind.  And remember that everyone has days when they stay in the pajamas all day, but if these days start melding together, please reach out and talk to someone.

And some days, you just need to wear a crown.

 

 

December 21, 2016 Posted by | addictions, bipolar disorder, Communication, coping, depression, Eating Disorders, family, feelings, health, mindfulness, progress, recovery, relationships, shame | 1 Comment

yet another post about taking care of you

Take-care-of-youI haven’t been around much (again).  I’ve hardly been online and my email and facebook were neglected.  I didn’t socialize.  I didn’t even write letters.  (I communicate my deepest thoughts through snail mail because I’m old.) These previous three weeks have been rough on my family.  My grandfather on my father’s side passed away, and I spent the majority of my time at the hospital and nursing home, and then we had calling hours and the service.  He lived a long life (he was 93) and I am at peace with the conclusion, although I will miss him.

I was kind of worried at the beginning of this period.  Even before the eating disorder had hints of starting, my tendency is to take care of others before considering my own needs and desires.  I spent a lot of time with my grandfather’s wife, making sure she was getting up to walk around and getting sleep and eating.  In the back of my mind, I do admit that I wondered if I would need someone to remind me to do those same things.

My journey of recovery has been full of ups and downs, but after this past month, I must say I am proud of how much I have changed.  Taking care of me–it came naturally.  I knew my limits and, even after thinking “But I should do this,” I would speak up and take care of myself–be it through a trip to the cafeteria or going home to sleep.

Yoga probably contributed to this more than any other therapy.  After I decided to fully recover, I took one full year off of all exercise–including yoga–to break my cycle of exercise addiction.  After that year, I began a new relationship with yoga.  No longer did I step on my mat with the intention of gaining muscle and flexibility.  My intention instead was to listen to my body.  What did each pose feel like?  How did my body respond?  What exact muscle was affected?  Did I like this pose?  Did this pose feel good on the inside?  How was I affected emotionally?

Through yoga, I learned my body.  Not just its lines and curves and thickness, but I learned how to feel–and how to respond appropriately.  I learned how to respect my body for what it could do for me.  I learned that my body has limits, and I need to respect those limits.

I found out that I don’t need someone to take care of me (although having my mom make me dinner is always a beautiful thing!).  My body will tell me to take care of me.  By paying attention to my body, I felt hunger and sleepiness and sadness and stress and joy and love.  And I reacted with love for myself.

I have absolutely no doubt that if I had not taken care of myself, I wouldn’t have been able to help my father and uncles and my grandfather’s wife through all of this.  I would not have been a help, but a hindrance.  It was not selfish to say, “I need to go home for the night.”  It was necessary in order to help again the next day.

Other people need you in their lives.  But in order to be there in their lives, you need to take care of yourself.

June 12, 2015 Posted by | bipolar disorder, Communication, coping, death, depression, family, feelings, mindfulness, recovery | , , , , , , , , , , , , , , , , , , , , , , , , | Leave a comment

The bad, the good, and some confusion

I’m thinking this will be more of an update post rather than a post with some grand enlightenment.  But if you have any enlightenment for me, please share!

I’ve been in NY for three months now.  I am finally a NY resident and own a car that has NYS plates and is legal to drive and everything. I don’t remember any previous move being this difficult, but maybe I’ve blocked those difficulties from my memory. 

Some things have been difficult:  I had to put my older cat to sleep, my grandfather is in the hospital, change is always difficult for me, and I feel like I’ve seen a zillion doctors in trying to get my treatment team set up.  And, I thought it would be most difficult finding a cardiologist familiar with my condition, but there just happens to be a specialist at a nearby hospital.  I’ve had a nasty rash off and on, although we don’t know what it’s from (a higher than normal pollen count of a mystery plant is our best guess right now).  I’ve had labwork several times.  I’ve had a CT scan of my brain.  The results have been positive in that no tumor has taken over my brain and my iron stores are normal (which is nice since I hate getting iron shots). 

Some good things:  the anxiety is not as severe as it was, and I have been handling stressful situations with more grace than I was in the spring.  I love my new psychiatrist and trust him–and some of you know that when I say that about a shrink, it’s pretty significant.  The ECT treatments began at ten day intervals and are now at 17 day intervals.  It was a smart decision to move back to NY and although living with another person in the house has been a big transition, I am grateful for not living alone right now and very thankful for everything my parents have done.  And I got a kitten:  Camena.  Who can’t smile while watching a two-month old kitten?  My dad has even fallen for her. 

But sometimes, I am just so frustrated and tired.  I knew I wouldn’t be better in three months, but I was hoping I’d be better than this.  And finding doctors has been draining.  My psychiatrist was set up for me when I moved here, so everything was set and ready to go and there was no lapse in treatment.  But finding a therapist was riddled with obstacles–and I really had no idea what to do.  When I moved to Missouri in 2008, I contacted the student health center and specified my concerns and they called back with a treatment team all set up.  This summer, I wanted to scream, “What am I doing wrong?  Someone find me a damn therapist!”  And then I found one, and then I had to decide how to tell that therapist I would prefer working with someone else, someone with a different therapeutic approach.  And now I am super nervous about meeting him for the first time this week and really wish I could call my old therapist for support, advice, or answers.

And I’m back in that spot many of you can understand all too well.  I don’t feel like my doctors believe me. I mean, my psychiatrist definitely knows the severity of the depression and anxiety because he’d been talking to my doctors in MO for a good three weeks before I moved to NY.  But my general physician–I don’t know how to make her see that I am scared.  I know the physical effects of depression and anxiety.  Quite well.  What I’m feeling now is not the same as being depressed.  But how do you argue with labs?  I’m starting to question if these symptoms are just in my head.  And maybe I just need to buck up and move on.  Except for the whole “it takes too much energy to get out of bed” thing, that sounds like a grand idea.

My only comfort this summer has been that I’ve recently started working on my writing again, with the intention of sending things out.  I can’t sit and write all day like I used to, but I have made progress on certain essays.  So maybe things are better than how I feel they are. 

So please, enlighten me with your wisdom.  Or ask me questions so I can spend my time obsessing about something else!

September 6, 2014 Posted by | bipolar disorder, Communication, coping, depression, Eating Disorders, ECT, family, feelings, guilt, health, heart, progress, recovery, therapy | Leave a comment

some regrets . . . and success

“How many times have I, in my moments of brokenness, looked at my life and seen diminished worth and value?”  I just read this quote on a To Write Love on Her Arms post.  And it was a good day to read it, for this is something I have been struggling with as of late. 

I’m 37-years-old, unemployed, living with my parents, and broke.  I am 100% completely dependent on my family right now.  This was not where I wanted to be when I turned 37.  I had imagined so much more for myself.  And I can’t help but look back on my past and say, “If I had only done X differently.”  Regrets.  I have them.

  • Regarding the anorexia, I wish I had listened to everyone and actually accepted treatment that first time in the hospital.  Or the second.  Or the third. 
  • I wish I hadn’t had to take time of off school.  At every single freaking school I went to:  my first bachelor’s (I year), my second bachelor’s (only three weeks), my master’s (one semester), and my PhD (one semester, then I went back to school, and then I left for good, no PhD in hand).
  • I wish I hadn’t attempted suicide in 1997.  I realize how much pain I caused my family and friends.
  • I wish I had been a better friend, that I had been able to exist beyond my illness.
  • I wish I had gotten better sooner.  As in “the very beginning” sooner.
  • I wish I had a PhD, and a dissertation (that’s not only in my head), and something on the market. 
  • I wish I were on the market.  The job market, that is.  Actually, I wish I was in that tenure-track position I was supposed to be in by now.

 

There are more.  All along the lines of “If you hadn’t screwed up, you’d be where you were supposed to be right now.  You’d have been successful.”

I cannot help but compare myself to friends I met along my educational path.  I cannot help but compare myself to people I admired and who I wanted to be like.  I cannot help but compare myself to my brother, a successful eye doctor.  And I feel like success is just something I’m not meant to have.

People have been reminding me of a few things:

  • I have the rest of my life ahead of me.  To do lots of things.  To reach my dreams.  I have no idea what tomorrow will bring.  And, regarding my faith, maybe this is part of the plan, and maybe this  will help me become the person I’m supposed to be.
  • As for accepting help with the eating disorder.  Maybe I could have done it differently.  But I was still just a child, and I had no idea what was ahead of me, and I had little support in key places. And I did fight enough to stay alive.  And I did eventually recover. 
  • Since recovery, I have advocated for other people, I have lobbied for mental health parity, I have written articles for some journals and newspapers regarding eating disorders. 
  • As for the ‘getting better sooner’ wish.  I did cooperate with my doctors regarding the Bipolar disorder.  I took my meds, I went in the hospital when I was told to, and I talked to my treatment team.  We all tried.  But we have found out I have a particularly difficult form of Treatment Resistant Bipolar Disorder.  We could not have sped up the progress and eventually, I ended up here, getting treatment that is effective for me.
  • As for the education:  I had to take time off of school, true.  But I do have two Bachelor’s degrees and my Master’s in Fine Arts.  And I got into the PhD program of my choice, and I learned a great deal during the time I was there.  Both personally and regarding my writing.  And I got to learn Latin. 
  • Regarding the job:  nope.  I’m not teaching right now, as I had wanted.  But I have taught successfully at two colleges, and I have read my student evaluations and my peer reviews, and I am happy with my performance.
  • I do not have a dissertation all typed up to present to a committee.  But I do know what I wanted to write, and there is no reason why I can’t write–and publish–that material now.
  • Yes, I could have been a better friend, as evidenced by the number of people who just couldn’t take any more from me and left.  But I was young.  And I made mistakes.  But I’d like to think I have since learned from those mistakes and become a better friend in the process.
  • I really wish I could erase the suicide attempt.  Just erase it completely.  And honestly, I fear this will always be a regret that haunts me.  But I did learn from that event.  I learned that I did not want to commit suicide.  So when the depression took over and the suicidal thoughts got to the point where I was scheduling my plan out in my calendar, I asked for help. 

 

Part of this is a feel-good entry for myself.  Part of it is to let people know that we all have regrets, and mental illnesses are well known for taking away confidence and self-esteem and self-worth.  I think we all need to make these lists.  Struggling for recovery can make one feel weak, but acknowledging what you have accomplished and what you may still accomplish can help in those dark moments. 

And even after recovery, there is often the regret that it took so long to recover.  To that, I ask you this:  Are you alive now?  I certainly hope so considering you’re reading this on the computer, and I’m pretty sure my posts haven’t reached the afterlife yet.  You’re alive.  And that is the greatest success of all.

 

 

August 9, 2014 Posted by | addictions, bipolar disorder, coping, death, depression, Eating Disorders, faith, family, feelings, guilt, identity, progress, recovery, shame, suicide | 1 Comment

the pleasures of shame and guilt

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A–Let’s see if I remembered how to insert a picture into a post correctly!

B–Now that I am blogging again, I have like a zillion and one topics in my head to write about.  So please accept my need for a creative outlet.

Shame and guilt.  Let me tell you about my heart.  First, let me address a private message I received regarding the last post that told me I should not make fun of people with heart problems because their heart may actually be dying.  So for those who have just started reading this blog–my heart actually is dying.  Or, to be specific, the right ventricle is dying.  The rest of the heart works pretty well.  It’s a genetic form of progressive degeneration, AKA Arrhythmic Right Ventricular Dysplasia (ARVD), which means that the muscle cells of my right ventricle are slowly dying and are being replaced by fat cells, thus enlarging that portion of the heart and affecting the electrical functioning, causing dangerous arrhythmias such as Ventricular Fibrillation (VFib), or the always fun Sudden Cardiac Arrest (SCA), which I have experienced.  And honestly, it wasn’t all that fun.

BUT.  In the process of seeing doctor after doctor and getting test after test done and finally being diagnosed with the actual illness (it’s really kind of rare and not the first illness people look for, especially since it’s particularly difficult to see) I was never once asked any of the following questions:  “Why is it happening?”  “What did you do?”  “How could you have prevented it?” and further along:  “Why aren’t you better yet?” “Are you working yet?”  “Why aren’t you at least volunteering?”  What I did hear was, “OMG, I am so sorry!”  “Is there anything they can do?”  “is there anything you need?”  “Is there anything I can do to help?”  and further along the road: “How are you feeling?” “Are you getting rest?”  and “Will your brother be okay?”  (he was tested and he does not have the gene)

People were supportive and as understanding as they could be and dropped off meals for me to eat and took me places when I couldn’t drive due to my arm being in a sling after the surgery.  The cause of the distress wasn’t wonderful, but my friends and family were.

Change the scenario just a bit and tell people you have Bipolar II, and while the doctors feel that it can be managed, they have realized that–in my case–there is a high chance for relapse and that our job is to catch those relapses sooner than before and treat them effectively sooner than before.

Questions I was asked:  “What did you do?”  “But you were fine last year.”  “Aren’t you taking your medication?”  “Why is it taking so long to get better?”  “What haven’t you done to help yourself?”

In other words:  This is obviously your fault and why aren’t you choosing to get better?

I realized while journaling the other day some things about my therapist in MO.  A) I made a shit ton of progress with him, more so than with any other therapist.  B) I thought he was the best therapist I had ever worked with and was sorry to have to terminate with him.  C) There were times I would walk out of his office and start crying because I was so ashamed and guilty, and also pissed off at him for bringing up these feelings.

One of my problems/addictions since I was in junior high has been self-harm.  I “discovered” DBT therapy in 1999 and it helped a great deal.  My therapist in MO used DBT therapy with me while I was in MO.  Part of doing DBT requires doing a Chain Analysis if you do engage in self-harm.  Basically, you write down every single little thing you did leading up to the event and then go back and write down what you could have done differently.  This can be helpful.  It can also make someone feel like, “Holy shit.  Why didn’t I do that?  What is wrong with me?  When am I ever going to get this right?  Why didn’t I think of that?”  Going through a chain analysis typically made me feel worse and worse as the session went on because I really did know the skills I should have used but didn’t.  And near the end of my time working with him, it made me feel even worse.  Once, I went eight months in between instances of self-harm, and his first question was, “Why didn’t you _______?”  He did not say, at any point, “Wow.  Eight months is a long time for you.  Good job for making it that far.  How can we do that again?”

Then I was hospitalized in May of this year.  Again.  And I was there for a full month.  I was ashamed to walk back on the unit because the staff all knew me, and what would they think of me being back yet again?  My favorite nurse saw me, said, “Hi stranger! It’s been an awful long time since I’ve seen you here!”  And then she gave me my night meds and said we’d talk in the morning.  She said she was proud of me for seeking help, and that she had seen an amazing amount of progress since the first time she met me nearly six years ago.  I was ashamed because I was even there at all.  She said it showed progress because I didn’t go jump off the bridge and realized I needed help and asked for it.  I would come to her on the unit and say, “I feel like cutting.”  And she’d say, “I’m glad you came to talk to me.  What can I do to help?”  There were no recriminations, or questions of why.  Just an acknowledgement of the fact that I asked for help before things got to the point of restraints and IMs, thus avoiding those situations entirely.  When I told my psychiatrist I had cut, I was scared about the lecture I was sure to get.  Instead, he said, “Huh.  Well, you haven’t done that in a long time.  How is this current medication regimen helping or not helping?”

What I learned is that it is much more helpful to hear someone tell me I’ve made progress than to hear someone ask me what the hell happened.  I don’t mean to say I want all that fake bubbly-all-positive-self-esteem bullshit, because at some point I do have to talk about what happened and all that.  But hearing someone say they’re proud of me?  That does a whole lot to push away the shame and guilt that come with many mental illnesses and addictions, and makes it much easier to discuss things openly.

People did not choose their illness or addiction, but recovery is, to some extent a choice.  one hell of a terrifying, difficult choice.  And there will be set backs.  We know when we take a step backwards.  We’re not stupid.  What we need to hear, without judgment, is encouragement to get back up again.  And along the way, we need to hear that we’re doing the right thing by taking our medications, going to the doctor, avoiding bars or anywhere that triggers an addiction.  Saying, “Thanks for taking your meds lately.  I really hope they’re helping” is actually a nice, comforting thing to hear, and a reminder that someone’s got our back.

 

update:  thank you to all my friends and family who have been supportive and encouraging and have stood by me through all of this without making me feel any guilt or shame.  Because of all of you, I wear short sleeves in public (and a bikini when I go swimming!) and am learning not to be ashamed just because I have Bipolar II.  Thank you to anyone who has helped me see that mental illness is a physical illness and needs to be addressed and talked about.

 

August 1, 2014 Posted by | addictions, bipolar disorder, Communication, coping, depression, Eating Disorders, family, feelings, guilt, heart, progress, recovery, relationships, responses, self harm, shame, suicide, therapy | Leave a comment

Two way street? Three way street? How many different directions can recovery go?

So I’ve been back in NY for almost two months.  I want to make some things extremely clear right from the outset:

  • It was my choice to move back to my hometown.  We had been discussing it and other options for awhile, but for several reasons, I thought that this is where I need to be right now.
  • I am so so very thankful for the progress my parents have made in being willing to discuss this illness and accept it and learn about it and support me.
  • I am extremely grateful that my parents A) wanted to step in and help me and B) were in a position to do just that.  I’m sure they never planned on having their 37-year-old daughter move back home, and it’s been an adjustment for all of us, but it’s gone quite well thus far.

I don’t want people to read this entry and think, “Oh, she’s just unappreciative and doesn’t understand what her parents are trying to do.”  I do appreciate everything they are doing, and I know we are all trying.  I also know that sometimes, I need an outlet.  And maybe my venting will help you if you have loved ones recovering from depression.

 

A) I really really wish that recovery from mental illness was as easy as taking an antibiotic for an ear infection, of which I had much more than several while growing up.  You have an illness, you take some ear drops and take some antibiotics and you gradually feel better.  (Unless you’re the unlucky one who can’t take antibiotics.)  Recovery from depression:  take one medication and see what happens.  Let’s add another medication to see if that boosts the first one.  Hmmm, are those side effects causing insomnia?  Let’s try another medication?  Well, we haven’t see significant progress in six months, so let’s try a different type of medication.  And start all over.  Repeat as necessary.  Then, come to the realization that meds are not working, so we move on to ECT.  We find that that works.  And then we try to taper off of it and I relapse.  And we go back to routine ECT and taper off more slowly and move to maintenance ECT, and realize two weeks is too long in between sessions at this point, and move to every ten days with the hopes of eventually moving to once every three or four weeks.  And then, because we know the meds aren’t working, comes the task of going off them, but we can only start that long ass process once I’m strong and stable, and it will have to be a very very slow process to avoid dangerous side effects.

Needless to say, this is not a one way street.  You don’t decide to get better and work with your treatment team and then *bamm!* you start progressing toward recovery and never look back.  I had a rough day a few days ago, and the world was an ugly place and I didn’t want to get out of bed, let alone interact with any other human.  My father asked, “I thought moving home and eating better and having less stress on your shoulders would be helpful.”  silence  It has been helpful, and I have gotten better.  I have made so much progress since April and May.  But I have bad days.  Inexplicable ones that come out of the blue.  I have moments of panic.  I still keep tissues nearby.  I still retreat to my room a lot just because I can’t handle human contact.  But all this does not mean I’m not recovering.  In fact, the amount of time in between these bad days is growing, which is a positive sign.  Finally. 

And let’s hypothesize that in a year, I really am better and ready to join the world again.  There is absolutely nothing getting in the way between my brain and another relapse.  I cannot prevent it, just as I cannot prevent my heart arrhythmias.  This may all happen again.

B)  Today was “one of those days.”  Nothing really happened today that would have triggered me falling apart.  But I was exhausted, and stressed, and running around different offices to fill out various paperwork and then found out I am missing one crucial piece of paper to register my car in NY.  A piece of paper that currently resides in Missouri and will take an estimated 4-5 weeks to get to me.  So, until then (actually, I have until midnight to roam around the streets causing trouble), I have no car to drive.  And this just was the final straw that brought on the onslaught of tears.  I took klonopin as directed by my treatment team, relaxed, and listened to some music.  Then sat down to dinner and my mom told me, “It could be worse.”  And in my bitter snarky mood, I said, “Yes.  I could have cancer or a brain melanoma.”  Why is it that people with physical illnesses are shown pity and given encouragement and I’ve never had someone say to me, after explaining to them that my heart muscle is progressively dying, “Well it could be worse.”  Mental illnesses are painful–often in a physical way–and are often hopeless and the victims are filled with despair.  And there are days where we can’t imagine anything worse.  I mean, I had a schedule of events planned out and written down in my weekly planning book of how to get to a certain bridge at an ideal time so I could jump off of it because it had high fatality rates.  Please don’t belittle me and say “it could be worse.”  No.  In my personal case, it could not, and I don’t appreciate having my pain compared to someone else’s pain. 

So what I want people to know is that this whole “getting better thing” will have setbacks.  Some will last longer than others.  Rather than point out that I’m not better yet, encourage me by saying that I’m handling this setback in a much better way than before. 

And no, I am not upset at my parents.  I know they didn’t intend to hurt me in any way.  As I said, we are all learning and adjusting. 

 

July 31, 2014 Posted by | bipolar disorder, Communication, coping, death, depression, Eating Disorders, ECT, family, heart, recovery, relationships, suicide, therapy | Leave a comment