Something feels different this time.

Hi, everyone -

It's been a long while since I've updated this blog; a lot has happened since, but here I am - still here, still alive in the world. I have a lot to tell you, but I'm going to make the focus of this entry the journal entry I want to share with you, and I'll come back tomorrow and the next day and fill you in on the rest.
Those of you who know me know that I have suffered with this illness - the eating disorder, both Anorexia and Bulimia, as well as the Depression - chronically. It has been chronic, it has been severe, and the prognosis was not good. I am not the only person who had come to believe that I could not get better; I expected death, by the eating disorder or, more likely I thought, suicide.
I want to get to bed soon-ish because I am currently in treatment at the Partial level of care (you go during the day but sleep somewhere else) and have to wake up freakishly early to get there on time, but basically, the purpose of this particular blog entry is this: I want people to know that recovery is possible, even when you've given up on yourself. Even for the "Chronic", the hopeless. No matter how long you've been suffering and/or how bad it's been, something can shift, and it can happen when you least expect it. This entry may be missing some things, as I'm in a hurry, but I promise not to ditch the blog again; I want to share what I'm doing with others, particularly those who feel desperately hopeless, and I'll come back and fill you all in. So here's the entry I wrote in my personal journal just over an hour ago:

"Holy hell, I just spent the last three hours actually with other people, talking and engaging...with one of my roommates, M____, and another girl in Program, M____, who came over. SO out of character for me: every day I come back to the apartment, shut my door, and watch Netflix until I can fall asleep. I have grown to be afraid of actually interacting with others, and I never told anyone that I'm well aware that this 'routine' is isolation and based out of fear and anxiety, because I didn't want to have to change. But tonight M____ and I were walking back to the apartment together from where the Van drops us off, and we were talking, and it was fun...so I had a cigarette with her on our balcony. And we grew more and more honest and vulnerable with one another, and I grew progressively more and more comfortable, so I stayed. I became internally anxious when she told me M____ was coming over; I didn't know her well. But I decided to give her a chance. I told them I'd have to go call my parents and shower soon because I wanted an 'out' - but I stayed, and I wound up staying for hours, until it was getting late (considering how early I wake up) and I had to tear myself away to go actually shower. Generally I'd immediately watch Netflix after a shower (and it should be noted that my showering on a regular basis is not only major progress but incredibly recent), but I thought it would be good for me to journal. I'll probably watch a little of my show or read before bed, but tonight I'm choosing to veer away from my rigidity and routine - and to let that be okay.
My progress amazes me. It's incredible. It took ten months in treatment for it to become noticeable, measurable progress, but lately it's been one miracle after another - obvious things, and so fast. I have never done my laundry on a regular basis. I have gone months without doing laundry. I became so used to not doing it that I became afraid, in a weird way, to do it - I'd occasionally have thoughts about it, but not doing it was so much easier, safer, and more normal to me. I have done my laundry not once but twice in the last week, and I've come to discover that it just isn't that big of a deal. Not only does it take VERY little time, but doing it helps me to feel empowered, proud, and more confident that my recovery may actually last this time. This time may actually be different. For most people on this planet, doing their laundry is not groundbreaking: but I have lived with myself for over 25 years now, and I know what a big deal it is for me. It IS groundbreaking, for me, and it's a sign that something is honestly changing. For months now I've been trying every day to get myself to do it, but each time I'd tell myself: "Come on now...you know you're never actually going to."
And so I never did.
Today, I do my laundry. And that makes me brave.
Tonight I looked at my heavy body in the mirror, naked, after the shower; and I told myself that I was beautiful. What I am doing right now, and the ways in which I am changing, is a miracle.
I don't often go into the details with people about the severity of the behaviors I used or of the medical complications I suffered as a result because I don't want to 'trigger' anyone (people with eating disorders are often triggered by such things when in their illness), and because today I am not proud. But that I am alive is mindblowing. My body has suffered from sixteen YEARS of abuse - and I did not have a "mild" or "moderate" eating disorder. I have been in critical positions medically over, and over, and over - and I WANTED to die, because I was so desperately, despairingly anguished and hopeless, that I would not see a doctor or go to the emergency room - knowing that I was critically ill physically. I hoped that it would kill me. The miracle of my survival, of my body's resilience, felt like punishment - a curse. I would be up at some ungodly hour when everyone else was asleep because I could NEVER sleep, crying because I was alive.
For the first nine months or so of my treatment here at Eating Recovery Center, not much was different as far as my mental state was concerned. I spent every single therapy session with my beautiful therapist - and this was three times a week for nine months - talking about the depth of my hopelessness. My despair. How I wished things could be different - and I honestly did - but that I knew that things could not and would not change for me.
...and then, things did. Things began to change, after over a decade and a half, so slowly at first that I didn't notice. And then still so slowly, I thought I was imagining it. Then STILL so slowly, and it felt so impossible still, that I was too afraid to trust that it could be legitimate.
Very, very recently, I began to notice that something had definitely changed, and I slowly allowed myself to begin to believe that the small shifts I saw and felt in myself might be real. And I was scared, I was terrified, that by daring and pushing myself to believe in myself, and to allow myself to begin to have hope, that I was setting myself up to feel shattered. I had wanted things to change - I had been praying for the ability to experience hope - for years, and it felt like it was so unrealistic and unlikely and impossible that I could ever actually REALLY feel hope that I felt by believing it was real, I was almost being mean to myself.
It still scares me on some level, to allow myself to trust that these changes could last. But oh boy, I do let myself feel hope. And - I'll say it - even JOY. And confidence, empowerment, PRIDE. Yes, in MYSELF.
I also feel uncertain, and I feel afraid, and nervous. I feel suspicious. I am by no means, in NO way, overly confident.
Both are possible at the same time.
I have no clue what my future will bring. I'm utterly in the dark about what that will look like. I have a very deep understanding of the fact that it is extremely likely that I will relapse again. It's actually probably more likely, considering the history, than not.
But I allow myself this much: something feels different. I suspect that the outcome may be different this time.
It feels amazing.
Don't get me wrong - on occasion I have thoughts like: "Who are you kidding?"
But I have retorts. I choose not to indulge those thoughts.
There was a time in my life when I didn't have a choice."

That's all, for tonight. I'll be back. Love, peace, hope to you all <3

Sofia

The Little White Hearse - on death in the community of the mentally ill

The Little White Hearse

By Ella Wheeler Wilcox

 

Somebody’s baby was buried to-day—
The empty white hearse from the grave rumbled back,
And the morning somehow seemed less smiling and gay
As I paused on the walk while it crossed on its way,
And a shadow seemed drawn o’er the sun’s golden track.

Somebody’s baby was laid out to rest,
White as a snowdrop, and fair to behold,
And the soft little hands were crossed over the breast,
And those hands and the lips and the eyelids were pressed
With kisses as hot as the eyelids were cold.

Somebody saw it go out of her sight,
Under the coffin lid—out through the door;
Somebody finds only darkness and blight
All through the glory of summer-sun light;
Somebody’s baby will waken no more.

Somebody’s sorrow is making me weep:
I know not her name, but I echo her cry,
For the dearly bought baby she longed so to keep,
The baby that rode to its long-lasting sleep
In the little white hearse that went rumbling by.

I know not her name, but her sorrow I know;
While I paused on the crossing I lived it once more,
And back to my heart surged that river of woe
That but in the breast of a mother can flow;
For the little white hearse has been, too, at my door.

 

This is a lofty, heavy topic, and I hope I do it some justice. This was the first poem I read in my search, and it felt seamlessly fitting.

As someone who has suffered from mental illness for over half of her life, and who has been in and out of hospitals and treatment programs of various levels of care for eleven years, I have come to know many who have died from various diseases of the mind. Of the people I have known, most have died from eating disorders (a commonly known fact among sufferers but perhaps not among others; eating disorders have the highest mortality rate of any mental illness.)

The others have died by their own hand. And as of late, it seems that more and more people I know or people I know of are dying. It's as though death is literally among those of us who suffer in a packed crowd picking and choosing and taking. The death rate seems to be accelerating. On a forum I frequent many of us have been wondering if it's our age; if because many of us on that forum have been ill for so long and are hitting certain ages (namely our late 20's and early 30's) our bodies and minds have simply had enough. That's a fair assumption, I think, but does it matter? Because it's not just those among my little online community who are dying; it's those of us who have been suffering from mental illness everywhere, all over the world; we are your children, your mothers, your sisters, your brothers - your teachers, your loved ones. We are as precious as the healthy.

I was sixteen years old the first time someone I cared about died as a direct result of mental illness. He was fourteen years old, and he committed suicide. We had been together in a hospital for two weeks when I was fourteen and he had just turned thirteen. He was sweet, and funny, and incredibly smart. His smile was devious and lovely. His name was Gulliver, as of the stories.

I remember getting the phone call from a mutual friend, and how something cracked inside of me as tears streamed down my face at my introduction to grief; little did I know, this introduction was to crescendo years later at the age of 24, when I would lose one of the most dear people in the world to me.

His family was Jewish, and so he was buried the next day. I had never been to a funeral and didn't know what to wear. It seemed custom to wear black, and the only black pants I had (laugh if you want) had a hole in the crotch, so I taped them from the inside out. He was buried at the very top of a steep hill in a Jewish cemetery in Oakland, California. I met my friend at the bottom of the hill as I noticed how crowded it was, how many friends he had had, and how many people had loved him. The sun was mocking us that day; it beat down on our backs, and I sweat as we walked up the nearly perpendicular hill that led to his open grave. I could hear the tape crunching and swishing against itself - crinkle, crinkle, crinkle. It was almost funny, but not quite, and definitely not at the time.

That was my first experience with one of my peers dying. The next that comes to mind was a woman I was a bit closer with - we had been in a treatment program together in Sacramento, California, and she too committed suicide, though she had suffered from anorexia for many, many years and it's plausible that her suicide was related. Her name was Katie, and she was so loving and bright and brilliant. She had nearly completed her PhD in Molecular, Cellular, and Integrative Physiology at the University of California in Davis. She was a lovely human being, and an enormous loss for the world.

Then someone I had heard of, but didn't know personally. Then a few more. And as each pillar fell it seemed they grew closer and closer to me, until I knew one day that I would lose someone I loved very much.

And I can't lie and say I didn't see it coming with her, with my best friend Chrissie, but I was not expecting it on the day it did come. As mentioned in another entry I will not be sharing details of her death that are not well known. Her eating disorder killed her. That crack inside me that had formed when Gulliver died burst, and all of me shattered.

I am still picking up the pieces. July 10th, 2013. The day one of the people I loved the most in the world died at the age of 23, and I became horribly intimate with grief.

And recently - Gretchen Gleason, beloved on my little internet site who I happened to know in person because she too lived in North Carolina. Gretchen, who was personable and funny as hell and a lot of other things I won't mention in a blog entry, but know that I am smiling thinking of her. She died on May 15th of 2014 - just over two weeks ago. She died when her heart stopped in her sleep. And then another - Lauren Bottner, beloved by many in Los Angeles, California - a writer, a great spirit among us. And another - a young man, by his own hand, who I did not know personally. And another, and another.

What can we do? Is it a matter of prevention at this point? Can the "Chronic" sufferers be saved? How can we tell when someone is getting to that point? Do THEY know? How can we prevent it from getting so bad? How can we help people access the care that they need and deserve, and convince them if they do have access to take it?

I can think only of doing whatever I can for myself and for those I know and love who suffer, and suggesting that you do the same, that you choose to care enough to get involved, even when a situation is complicated and not necessarily something you feel like dealing with. Because these are lives we are talking about that are on the line. And, for instance, Gretchen's life - it was on the line at the very beginning of her disorder, before anyone even knew about it. And even with all of the support and love she had from her communities and family, this disease still took her. Levels of support vary among those who die. Almost all are loved by someone.

What can we do?

I'm really asking. If you have suggestions in addition to my own, please comment and start a discussion, because this needs to stop. And the very first step, I think, is making others aware of this endemic.

So now you're aware. Does it make you care more? Human beings are extraordinary and clueless at once! We don't know when we're fourteen and our best friend is kind of throwing up sometimes that ten years later it will kill her. We don't know when our child scratches herself at the age of 10 and we get called in by the school counselor that she will one day commit suicide - our denial gets the best of us, our ignorance, our business, our dedication to our own lives and careers and loved ones - and there's nothing any of us have done wrong when we didn't know there was something there to begin with. But life, if we can agree for a moment, is precious in that it's awarded to each person only once (if that is in your belief system) - for whatever reason from the day we are born the one thing that we can guarantee is that the animated, beautiful, funny little baby with the dimples will one day die. How can we make these deaths less in vain? (Apart from those of us who personally knew and loved them and are certainly doing all we can in this order?)

How can we begin to help one another to care more? To show that care? To DARE to show just how much we care, while we're still alive? How can we lose our fears of rejection and intimacy, of appearing a certain way, long enough to help save a life?

Am I making sense to you? It's very late/early now, and I've been up a terribly long while, but once this topic for this blog hit my brain it was go time, because that first step of awareness can't wait another second.

I invite you to care today, for yourself first and foremost, closely followed by love for all living beings.

Thank you for your time,

Sofia