Sunday, June 1, 2014

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

11 comments:

  1. I’ve struggled with depression, anxiety, and an eating disorder on and off for the last fifteen years. I have also managed to keep a lot of it under wraps. I completed college and a graduate program and am currently enrolled in another. i have been struggling and thriving at the same time for so long that I don’t know how else to be.

    I feel very lucky and also very confused by all of this. Even though I have been in intensive treatment on a couple of occasions, both were fairly short stays and I haven’t stayed in touch with many people I met there. I told a friend from school that I had spent time the past summer in a DBT-based residential program and she said “Oh, so you’ve been around people who are a lot crazier than you” or something like that. I know she meant well, but that’s not how it felt to me to be in treatment. It felt like we were all in this together, this thing that is trying to live when your brain is trying to kill you. I am sure some of us were sicker than others, and some of us will be luckier than others in terms of how our lives turn out, but the beauty of being there was in being understood. It does feel really random, who lives and who dies, who manages to get out of this hell and who doesn’t. It’s like that in life in general, of course, but it is magnified for those of us who think about our own deaths all the time and know others who do the same.

    I wish there was some simple way to help people see the significance and value of their own lives. It wouldn’t make it easy to live with mental illness - that will never be easy. But it might make it feel more natural to keep living when others around us die.

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    1. I still can't sleep ;-).
      Thank you so much for commenting, theendoforacles. You wrote beautifully and I'm so grateful for your input...I wish there were a simple way too, for my own sake as well as for the sake of many I love. And yours.

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  2. I will post a longer reply tomorrow, but for now, there's this:

    I wish, as someone who was standing on the other side of recovery, that there was some way to show chronic sufferers just how much better life is once you really commit to recovery (and I mean REALLY commit). I know that sounds like an empty platitude (it gets better! really!) but one of the most heart wrenching parts of recovery is watching people I love continue in the cycle and almost wanting to shake them (while also knowing that wouldn't do anyone any good) because it just hurts so much to watch.

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    1. Annie, THANK YOU for writing. It's great to hear from people all over the spectrum - in recovery, not in recovery at all, contemplating, etcetera. You are so lovely.

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  3. I appreciate your words here Sofia. There is such a significant need for deeper understanding about mental illness and the impact it has on those who struggle with it. I think that most people are just very ignorant about mental illness, simply because they haven't cared enough to educate themselves. That lack of education has led to people not recognizing symptoms in people that they know and minimizing the problem when it is acknowledged.

    Those of us who face our own mental health issues obviously tend to have a better understanding because we've had our own experience and we have witnessed the experiences of others as we have crossed paths with them through our own treatment journey. Even still, I personally struggle with reaching out to help people that I care about because I have such a strong sense of fear that I could say or do something wrong that may trigger their symptoms or behavior further.

    A few years ago when I was in a residential treatment center, a young lady ran out of a group session very upset. It was very well known that she struggled with self-harm. As the door closed when she ran out, the therapist looked at me and said "she respects you..you go check on her." I think my whole body was shaking. In my head I was screaming "YOU are the therapist..it's YOUR job to go talk to her." I was absolutely terrified that I would say something wrong and then (in my head at least) it would be my fault if she hurt herself.

    I would do anything in my power to keep someone from self-harm, whether I know them or not. But I guess my point in sharing that tidbit was that sometimes when dealing with one's own mental health issues, it can be extra challenging to support others, especially during their most desperate times of need. My fear in that situation was not rational because my words or behavior could not make her harm herself. Nor they make her NOT harm herself. That was her own battle. Nevertheless, my fear was real and impacted my ability offer her support when she needed it.

    So how do we support someone? Simply listening is sometimes key I think. And by not sugar coating things. Another thing I personally struggle with is fear of confrontation which results in playing the polite card when it's not what the situation warrants. Example.. I often see people I care about posting pictures online and people praising how great they look when it is pretty obvious that he/she is struggling severely with their illness. I typically don't join in the praise, but I just keep scrolling when I feel in my heart like someone needs to call the person out (privately) and discuss the reality of their current symptoms. How is it helping someone to pretend they are doing well??

    Sorry I've rambled on so long. Just as you are Sofia, I am so sick of the heartbreak that comes with hearing another person that I care about has passed away. Death resulting from mental illness is most certainly an issue that needs to be addressed and I thank you for your input on the subject.

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    1. Gabby,
      Your "rambling" meant the world to me. Your words are extraordinarily important, and so truthful and they come straight from the heart, as I know everything from you does.
      I so appreciate your input and hope others read it and respond as well. I'm so grateful for you in my life.
      With love,
      Sofia

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  4. While research on new and inovative ways of understanding mental illness and how to treat it are so important, I feel education and decreasing the stigma are keys. I often wonder if we treated MI like cancer and said it is something that happens inside beyond your control and we treat it and try to keep you alive while we search for a cure. We will pray for you and support you and love you" Maybe this would be a place to start

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    1. Thank you so much for your suggestions; I read your comment on my phone while I was out on my way back from an appointment and so had the opportunity to think about it on the way home, and I realized - I think I've been so surrounded by mental illness for so long that, as stupid as this sounds, I've started to forget in a way (while it stares me straight in the face all of the time) how important decreasing stigma IS, how powerful the stigma around mental illness still is and how many people do NOT accept mental illnesses as actual illnesses.
      God, there's so far to go, isn't there?
      Thank you so much for your input, I love it.

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  5. Sophia i just saw your writing... i'm Lauren Bottner's mom. thank you for remembering her... we miss her terribly.
    mim

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  6. Sophia i just saw your writing... i'm Lauren Bottner's mom. thank you for remembering her... we miss her terribly.
    mim

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    1. Of course; Lauren is remembered by so many. I am sending my heart filled with love.

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