"One Face of Mental Illness"
We live in a world where people say that they accept mental illness, but still judge it. Where a person who suffers from mental illness's perceptions, experiences and opinions can be written off as delusional or fictitious because they are Mentally Ill. And God forbid we should think of them as a PERSON who HAPPENS to SUFFER from an illness, rather than as purely an illness personified. Seriously - I don't think there are many people in the world who can claim that they have no judgment whatsoever about psychiatric illnesses, including the people who suffer - but acknowledge that, and then open your mind and see the whole person. A person with an eating disorder may be deluded in the realms of food and weight, but does that mean that everything else they think, experience and believe is invalid? No! A person with depression may see the world through a foggy lens of darkness, but does that rob them of their ability to love? No. Mental Illness sometimes DOES completely overtake a person - but that doesn't mean they aren't still in there, waiting for their opportunity to come back out. I have had so many compassionate, understanding people in my life - I have been very fortunate - but I have also been sorely judged and mistreated as a result of being "Mentally Ill". I am saying today that that is unacceptable, and that I will not tolerate it. A person who has cancer is not cancer. A person who has depression is not depression. A person who has trauma is not what happened to them. And a person with an eating disorder is not the eating disorder. They are a human. Capable, intelligent, valuable, and with potential - like every other human being on this planet - in their own way.
I was nine years old when I developed Anorexia Nervosa, twelve years old when I began to purge (force myself to vomit my food) and intentionally harm myself by cutting and burning my body. Thirteen when I started binging, fourteen when I attempted suicide for the first time and was resultingly institutionalized on an adolescent behavioral health unit (more commonly known as “the psych ward”). This would be the first of many institutionalizations, both in hospitals and residential treatment centers, and those early years and emerging behaviors have led to a lifetime (thus far) of chronic mental illness and failed treatment attempts. “Failed”, meaning that I cannot yet say that I am “Recovered”, period, the end. I am 27 years old now and have been struggling with my mind for 18 years, the vast majority of my life. Almost all of my friends I have met in treatment centers, hospitals, or online forums for those who suffer from mental illness. I have had three jobs in the last ten years, none of which lasted more than four or five months, and I have traveled the country – I have been to Boston, Oklahoma, Southern California, Denver, Utah, North Carolina…and I have seen very little of any of those cities or states, even those that I spent a year or more in. No, I was contained – held in buildings staffed by nurses and counselors, sitting at tables following rules that break all etiquette we are taught as children. Elbows on the table, no napkin in your lap. You are required to finish your food, and if you do not you will be supplemented with Ensure or Boost. If you do not do this, you will have a feeding tube forced down your nose and throat. If you resist the feeding tube and are an adolescent, you will be forcefully held down, and if you are an adult you will die or be court ordered to be restrained.
I have undergone ECT treatments for my once relentless and all consuming Bipolar Depression. ECT – more commonly known as “shock therapy”. I was given a muscle relaxant and put under anesthesia several times a week with electrodes attached to specific parts of my skull, and seizures were induced multiple times weekly until we reached the “maintenance” phase, when it became clear that I was one of the 32% that ECT is not effective for. And then miracle happened – after 12 years of being on and off a million different combinations of medications, of being overmedicated and undermedicated, of being poked and prodded and hopeless and suicidal and alone and feeling alone when I wasn’t – we found a combination of medications that has proven effective to arrest my Depression.
Of course, like most who suffer from mental illness, I suffer from multiple afflictions. Anorexia, binge purge subtype, Bipolar Depression, Anxiety, Post Traumatic Stress Disorder, etcetera. In April of 2016 (the year in which I am writing this) I at long last received my GED – my high school diploma, as I had to drop out of high school due to my illnesses and had been unable to function or even get by in school. I am 27 years old and I hope to finish my treatment (which involves a lot), and get a job, and go to college. I hope to use my experiences with mental illness to help others – I, once so despondent and lifeless, have goals and dreams and values. I have loved ones – people I love who also love me. I have hopes for my future, however dismal my past. I cling to the belief that full recovery is possible. I am not delusional; I realize that Bipolar Disorder is a lifelong thing, and I expect to be on medication for the rest of my life. I am more than okay with this. Some people struggle with whether or not to go on or take their psychiatric medications (or as those who are practiced medication takers called it, our “meds”).I can understand this dilemma to a degree. I understand that some people believe that the medication will alter them and make them not themselves. The unfortunate reality is that some medication does do that. Some people believe that taking medication means that they are weak or incompetent in some way. Some people do not like taking certain medications because there is no extensive research available on the long term effects of said drug. I can understand and respect all of this; I will say that for me personally, medication has made it possible for me to address the multitude of other issues I face. Medication has been a door for me, a door that opens into a room of riddles and puzzles and horrors and delights to solve and examine; some that may have no answers, and I am left to do the best that I can with what I face and what I have. Support is essential. Without the life saving treatment I have received I do not believe I would have made it past 18. Nearly ten years later I sit here in a hotel room in Southern California, where I am receiving treatment five days a week for my eating disorder and PTSD, and I write this with you in mind – whoever you happen to be – hoping to illuminate to some degree what it is like to live with a mental illness. My hope in writing this particular piece is to show you a bit of the person behind the illness. This requires openness and vulnerability on my part, because I am able only to share my story. I hope someday to interview others, perhaps anonymously if they so wish, and share their stories with you as well – but mine is what I currently have at my disposal. I am not going to share with you all of my deepest secrets, or my most intimate life moments, and I am not going to expose the parts of me that I believe for my well being must be protected. But let me tell you a little bit about who I am.
My name is Sofia. I have brown hair and brown eyes. I am half Caucasian, half Algerian. My mother’s name is Emily and my father’s is Salim. From the moment I learned to speak I fell in love with words, and I have had a lifelong love affair with books and journals. I am mildly obsessed with Tracy Chapman’s music, and recommend that anyone who reads this immediately goes and listens to the songs “Heaven’s Here On Earth” and “Remember the Tinman”. (You’ve got to listen to the whole thing for the full effect). My favorite flower is a tie between magnolias and sunflowers. I have no siblings, but grew up with three cousins that I love and adore, and am proud and grateful to be reconnecting with after some years of disconnect and estrangement.
I am bilingual. Well, sort of. When I was four years old I started at a French American School in Berkeley, California. I grew up in the Bay Area and when I was very little my parents would take me every week to feed the birds at the lake. My father recently told me a story about when I was five years old, and chuckled at the memory: I was holding our loaf of stale bread and a goose came and snatched the whole damned thing, and I ran after the bird screaming at it that it couldn’t do that, that it had to share.
I am covered in scars and I am not afraid or ashamed of them. I have some concerns about what others think when they see them – not because I care that they will judge me, because if they do that’s their own ignorant bias – but because I worry about how they will affect my ability to have a job, and how I will explain it to my future clients when I am (as I aspire to become) a practicing therapist or social worker. About a week ago I met a little girl in the hotel lobby, who fell in love with the swallow tattoo I have right above my left collarbone. We got into a discussion about her own art and writing, and I sat down and got comfortable. When she noticed my scars, she asked me what happened. Thankfully I was prepared for the day that a child would ask me this question, and I responded: “I won a fight”. She looked at me, wide eyed in awe, and said “Whoa”.
Yeah, kid. Woah.
Let me tell you about some of my dreams, hopes and goals. I have told you already that I hope to get and keep a job, and put myself through college, and work in the field of mental health. I also want to write, and attempt to make some impact – however small – on some people through putting one word after another, after another, and so on – and sharing it with as many people as possible. I took piano lessons when I was very young and I have been fantasizing lately about taking it up again. I love to sing, and have grown so out of practice that it is funny and a little bit embarrassing how little control I have over my vocal chords, but I still enjoy singing in the car, particularly when a song I love and have memorized comes on. I always play music while driving. After the ECT treatments and my year in Denver I developed an inexplicable phobia of driving, which I am only now beginning to overcome.
I am not recovered. I still struggle. But I would say that I have been in active recovery – one that is progressing forward continuously, however many setbacks I suffer and however slowly – for the last two and a half, maybe three years. I have begun to prove myself wrong, which has been one of the most rewarding, fulfilling things I have ever experienced in my life. I have begun to explore my spirituality; having grown up with atheist parents and attempting at age 12 to become a Christian, having explored Buddhism and tried on a variety of hats, I have found that I do not believe in any one particular God. Do you remember the song I asked you to listen to, “Heaven’s Here On Earth”? One of my major life’s philosophies is summarized so beautifully in one of the lyrics from that song: “I have seen angels wearing their disguise, ordinary people leading ordinary lives.”
I have discovered that my spirituality is Love. Can “Love” be a spirituality? I questioned that when it occurred to me, and then I thought - my spirituality can be whatever the hell I want it to be. That’s what makes it mine, that’s what makes it spiritual. It is what inspires me in my core and gives me life, gives me the strength to face each day as it comes and each obstacle – each goddamned fucking obstacle, they never seem to stop appearing – with the belief that life is worth the trouble.
I still sleep with a stuffed animal. He is male, he is a cat (though many people mistake him for a bear) and he is named “Cuddles”, which if you know me is hilarious because I have a profound aversion to cheesiness. Little Sofia apparently didn’t.
I love colors, particularly magenta, ochre yellow, sea green, sun orange, periwinkle blue, bright red, and olive green. I like to paint these colors. For a time I dabbled quite a bit in art, and I have begun to do so again, although I am focusing most of my creative energy and time on reading, writing and words. I fantasize about writing fiction, but find that non fiction comes so much more easily to me. I think I’ll probably take some writing classes once I get to college, and we’ll see how that goes. We’ll see what I fall in love with most.
I love to read poetry. There is nothing quite like reading what your soul feels in a book – words that another human that you most likely do not know, potentially from another time, wrote. How beautiful to resonate so deeply with another human being. The only thing I think that I find more satisfying than that is finding the right words to express myself, to be the creator of that work which I hope will speak to someone else out there.
I think I will stop here for now. I can only hope that this has in some way impacted someone, or helped them to feel a grain of hope, or given them a little nudge – a small reminder that we cannot change what we are given, but we can choose what we do with it. I also hope that those reading this who do not suffer from mental illness will use this as evidence that people who suffer from mental illness are still competent, capable, fallible human beings – just like you.