Introduction
Introduction - be a lotus
“You must go through darkness to finally see the light.” Jessica Lunn
Lotus flowers. They grow from a bed of murky water and mud. Slowly, over time, they sprout up towards the surface of the water and eventually blossom into a beautiful flower. Their journey is not easy. They start off in the darkness, but nonetheless, they keep reaching for the light until they finally feel the warmth of the sun rays beaming down on them. When I think about lotus flowers, I think about life. Let’s be real, life is hard. Many of us find ourselves embedded in the mud of murky water and have to slowly climb up toward the surface to find the light. It isn’t an easy task, but it can be done, especially with the support of others and a little bit of hope.
If you are at a point in your life where you do not feel that you can hold the hope for yourself, please understand that there is someone else out there holding it for you. They will hold it for you until you are ready to take it and hold it for yourself. For a long time (it only took me about 20 years to figure this out), I could not see this. Two decades later, I am finally able to hold some hope for myself and for others.
My life experiences have taught me many lessons and have also given me a different perspective on my life and on that of others. Don’t get me wrong, my life is by no means perfect, and I still have a considerable amount of painful, difficult work to do. But, a start has been made and I am on my way. When I want to quit, give up, and walk away, I remind myself that I am not travelling this journey only for myself (although if I was, that’s okay too!). If my pain helps at least one person, or makes one person feel less alone, then my quest to the surface of that murky water, despite all obstacles, is worth it.
When I became a nurse, I took an oath to follow the four ethical principles of nursing. One, nonmaleficence, or to do no harm. Two, beneficence, or to do the greater good. Three, justice, always to be kind and compassionate towards others despite race, religion, ethnicity, or gender. Four, autonomy, to allow patients the right to make informed decisions about their own medical care, by advocating for the patient, educating them, informing them of risks and benefits, and respecting their health care decisions.[i] Nurse or not, I will always uphold these oaths because that is what everyone deserves. In fact, this is one of the reasons why I chose to write this book. Greater knowledge means greater freedom to choose and act, and, by sharing my own information in this way, I hope to enhance people’s ability to make good, informed decisions. Even people who have made poor decisions, though, or who have acted badly, deserve compassion. If you had asked me a year ago, maybe even a month ago, if “bad people” deserve compassion, I would have written a different story. I have since come to terms with the power of compassion, which is truly mind-broadening. Thoughts can change; they are not permanent.
When you cannot forgive the people in your life who have hurt you, you continue to give them power over you. They do not deserve to hold that power over you and you do not deserve to let them! When you hold onto grudges and blame, you remain stuck. Forgiveness will get you unstuck. Forgiveness does not take away the hurt or the suffering, nor does it invalidate your experiences, it simply gives you back the power that was taken away from you. It has taken me a lifetime to learn this, and is still something of which I have to remind myself.
I never thought I would be able to forgive the people who tore my soul apart, but I was wrong. If I can learn to forgive, then so can you. Not that this is simple, it’s far from it. It is a lengthy and arduous task; in fact, it will probably be one of the hardest things you do in life. It takes a lot of effort, perseverance, willingness, and self-compassion to forgive; however, I can assure you that it will be freeing. Freedom from mental anguish is one of the best gifts you can give yourself. So, if you or a loved one are feeling broken, I am here to tell you there is nothing you need to fix; you just need to let yourself grow. Be a lotus.
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I have thought long and hard about how I wanted to tell my story, how to talk about my life with an eating disorder, my life experiences, and my rocky climb toward something like recovery. Nothing I wrote ever seemed to capture what I wanted to express, or to paint a “Picasso” of my life, so to speak, which would encapsulate and portray everything I wanted to say in one go. One picture is worth a thousand words, as the saying goes, and that is one of the reasons I love art. I wanted my “painted” life to project a certain image and message, that everyone would be able to see with minimal self-interpretation. It was naive of me! Writing down every single detail does not necessarily make a good story. I came to realize that you need selection as well, and, fundamentally, emotional honesty. I realized that if I stayed true to myself and spoke from the heart, then the rest would follow. Why be so formal and literal, when being genuine can reach an audience just as well, if not better? Humans want to feel validated; we want to feel we can relate to someone else. We need the connection. It provides comfort.
Are you wondering about the person writing these words and future words that you will read? I would be. When I began writing this book, I was a 31-year-old magenta-haired woman seated on an uncomfortable airplane seat, flying home from a treatment center that had just banned me from accessing any further help. Go me! After having to leave what was my ninth treatment center, and feeling completely misunderstood, I knew I needed a way to help the system change. I had made mistakes while in treatment and had been resistant to change at times, but leaving treatment was also a systematic chain of errors outside of my control.
I endured numerous difficulties throughout my childhood and adult years, and unfortunately, those past difficulties have significantly affected me. They continue to influence me in current situations, and will probably still be there in future situations. I’ve had eating disorder thoughts and behaviors since I was around 11 years old, but was not formally diagnosed with anorexia nervosa until I was around 15 or 16. That was when I entered treatment for the first time. I did not realize how ill I really was and told myself that I would be going to a place like a “camp” for a month. Little did I know it was more like boot camp! I lived at that particular facility for approximately four months and continued my education online on the days I was given to opportunity to do school work. I did not take treatment as seriously as I should have, but at the time, I did not understand my disorder or why this was happening to me. I just wanted to feel better, and the only way I knew how to do this was to starve and injure myself.
Looking back, I wish that I had gone into the treatment more deeply - then maybe I would not have turned into a severe chronic case. Maybe I could have saved myself all the pain, suffering, and trauma of eating disorder treatment and hospital stays if I had made more of an effort to understand what was going on? In my defense, however, I was a teenager with minimal insight to my disorder, and how many teenagers are wise enough to understand that adult decisions and actions are sometimes for their own good? I also suffered from anosognosia (a neurological condition whereby you are unable to perceive or be aware of your own illness, see next chapter, What is an eating disorder). Today, after nine treatment admissions and one admission to drug detox over the years, I have gained incredible insight into myself, my disorder, and the whole mental health system. This hard-earned hindsight is something I want to share with you. I cannot go back and change the past, but I can learn from it and use that knowledge to help myself and others in the future.
I say that I am “just” a 31-year-old woman trying to write her first book, but I am so much more than that. I am an artist, an emergency room nurse, a writer, a friend, a sister, a daughter, an amazing dog mom to Henry, and a Hufflepuff (any Harry Potter fans here?) Thank you, that’s true. A very wise, genuine, caring, authentic, and amazing woman told me and the other patients that we had to say, “Thank you, that’s true”, whenever we received a compliment. At first, I thought it was weird, but it does have a nice ring to it, and now I use it all the time!
Now that you know who I am, I am going to tell you who I am not. I am not my eating disorder, my drug addiction, my trauma, my anxiety, or my depression. These are all maladies I battle against on a daily basis, but they do not define who I am. Nobody should define themselves by their inner demons. A cancer patient does not introduce themselves as, “Hi, I am cancer”, so why should people with mental illnesses go around and say “Hi, I’m anorexic and a drug addict”?
Many people, including myself, form their identity around their problems. If you identify with this, I invite you to step out of the box. These demons that you and I face every day are just that, demons. You are not your inner demons. It is very important to remind yourself of that. Defining yourself in terms of your condition constitutes an injustice to yourself. Unfortunately, it is a difficult cycle to break, but it can be done!
Numerous times I have asked myself why my life has turned out the way it has. It is okay to have some self-pity, but do not dwell in it, it will only prevent you from becoming that lotus. The question is not, “Why has my life turned out like this?”, but rather, “This is where I am at right now, where can I go from here?” I would never wish the hardships I have gone through on anyone else, yet I am thankful for all of the good, bad, and ugly experiences. If someone asked me if I would go back in time and change the outcome of my future, honestly, I would state that I wouldn’t change a thing... except for maybe some of those awful yearly school pictures!
My personal story has shaped me into the person I am today. I am able to identify the value in the things that I might not have valued before. My experiences have created a more empathetic entity, possibly made me a more compassionate nurse than I would have been originally, and have given me wisdom beyond my years.
It is difficult to explain what it is like to live inside a brain that only knows eating disorders, addiction, and other co-morbidities. People can empathize with me, but unless they have gone through my exact experiences, they will never know how it truly feels. I have included journal entries, poems, and personal experiences in addition to research and education to express what I cannot express in other ways. The intent is to create insight and understanding... to show you how I started from the mud and made my way up to the surface to blossom, just as you can.
1 - What is an eating disorder?
An eating disorder is an all-consuming mental disorder with dangerous physical effects. It’s not someone messing about with their meals for a bit of drama or attention – it has much more to do with the mind than with food itself. It is torture, no fun, and has potentially devastating consequences. Except for opioid overdose, eating disorders have the highest mortality rate of any mental illness. An estimated one person dies every 52 minutes as a direct result of their illness and its complications – that’s 10,200 deaths a year in the United States.[ii] According to ACUTE Center for Eating Disorders & Severe Malnutrition, Denver, USA, patients with anorexia nervosa (AN) are five times more likely to die prematurely due to medical complications and 18 times more likely to die from suicide.[iii] Bulimia nervosa (BN), has a mortality rate of approximately 3.9% and those affected are also at a higher risk of suicide.[iv]
Most people have heard of anorexia, bulimia, and binge eating disorder (BED). However, there are several more types of disorders less known to the community, or which receive less exposure. These other disorders include avoidant restrictive food intake disorder (ARFID), pica (the urge to eat non-food items such as dirt or earth), other specified feeding and eating disorders (OSFED), and rumination disorder (regurgitating food after eating.) The Diagnostic and Statistical Manual of Mental Disorders (DSM-V) provide the criteria for diagnosis of all mental health issues. I believe that the DSM-V can be useful for providers as a diagnostic tool, but also harmful, in that it can prevent people from getting a full course of treatment. Not only is it a diagnostic tool, but a tool for insurance companies to determine when to stop coverage. In treatment, I have seen several people admit (very disordered and unhealthy) and get discharged a week and a half later due to insurance stating they do not meet the weight criteria. A week of treatment is not helpful for anybody, in my opinion. Having a “normal” weight does not mean the eating disorder suddenly went away. It is a mental disease, not a weight disease!
The most recent version of the DSM (5), has made several positive changes to the diagnostic criteria for specific eating disorders, for example, binge eating disorder (BED) is now considered its own diagnosis. In addition, the weight criteria of less than 85% ideal body weight for AN or anorexia changed to “significant low weight”.[v]
My biggest issue as a patient, is that the DSM-V now determines the severity of AN by their BMI (BMI of >17 is mild whereas a BMI of >16 is moderate and BMI >15 is severe). In addition, the DSM-V defines the severity of bulimia by frequency of binge/purge episodes.6 Yes, weight and/or frequency can help determine the extent of the eating disorder, although it does not determine the severity of the mental aspect of the disease. It is by definition a mental illness and numbers alone cannot describe pathology inside someone’s head! Severe or mild, that person still needs and deserves help.
