Fighting for Life by Athena Milios
“My aunt’s life was falling apart as I was struggling to rebuild my own, putting back the pieces in an effort to construct an identity separate from the illness.”
Personal Essay by Athena Milios
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I woke up at precisely 10AM, took my morning meds, made my coffee, smoked my morning cigarette, and heated up two slices of bread in the microwave. After breakfast, I paced my apartment, waiting for my meds to kick in, so I could relax enough to be able to sit in front of my computer and get on with my day.
My job as a medical transcriptionist meant that I could work from home, at my own pace, which I was very grateful for. I was a loner and led a simple, extremely structured lifestyle. I had discovered over the years that routine was critical in helping me to preserve my sanity.
I didn’t make it to my desk before the phone rang. It was my grandmother, calling to tell me that it was time to take my aunt to the hospital, because now she was refusing all fluids, even water.
My heart didn’t skip a beat when she told me this.
***
My aunt’s severe and enduring anorexia nervosa had been getting worse over the past few years. Partly due to her illness and partly due to her solitary personality, she had never married or had any kids. My mom recently hired a caregiver to help with my aunt’s care since my grandmother’s health had been deteriorating and she could no longer single-handedly manage my aunt’s condition.
Although we had all resigned ourselves to the fact that there was only so much we could do to help my aunt if she herself wasn’t motivated to get well, it was still extremely hard to watch her incrementally disappear and fight us over every bite we tried to feed her. She would hold every morsel of food in her mouth for up to half an hour, and would sometimes spit it out into a napkin when she thought we weren’t looking.
But it was hard not to look at her. Her cheeks had sunk in so far that you could see the outline of her dentures, and her arms were akin to twigs, tendons and bones protruding unnaturally. She looked 80, not 40. I had so many questions for her that I never got to ask. Most importantly: why had she given up fighting for her life?
As a recovering anorexic myself, I had gone through many hospital admissions and treatment programs. But after 9 years of struggling, I was finally doing somewhat better.
Although I was still living mainly off of oatmeal, bread, and meal replacement drinks — my stomach couldn’t handle much else after the years of abuse I had put my body through — I was finally in a place where I was at least receiving enough nourishment to function. I was able to work again. My concentration was good enough for me to be able to read a book and actually remember what I read. I could once again engage in normal conversations. My aunt’s life was falling apart as I was struggling to rebuild my own, putting back the pieces in an effort to construct an identity separate from the illness.
***
I sprang into action. My grandmother’s heart had been acting up recently, so she was in no condition to accompany my aunt to the hospital. My mother was at a work conference in Hong Kong. I was the only one left to handle the situation. My grandmother’s house was just a short walk from my apartment. It took one look at my aunt’s dull, drained expression to know we had already waited too long to call the ambulance.
When the paramedics entered the house, they were baffled at the sight of such a frail, yet relatively young woman. She stared at them from her wheelchair in front of the TV with wide, sad eyes. Then they looked at us. There was a silent accusation in their eyes: why did you let her condition get this bad before bringing her to the hospital?
They didn’t understand. Although her problems were now clearly physical, the root of her illness was mental. They didn’t know that we had tried everything. Psychiatric wards, rehab centers, outpatient treatment, day programs, group homes, even a nursing home at one point. But every time she gained some weight she would come home and her gradual deterioration would begin once again. She had been dealing with anorexia, anxiety, and depression for nearly twenty years. Unfortunately, there was no way we could force her to get better if she didn’t want to recover.
The paramedics didn’t know how to handle her. You could see the hesitation in their eyes, fear that they might touch her in the wrong place and break a bone or bruise her by accident. They carefully placed her on a stretcher as I followed behind them, carrying a bag of toiletries and clothing that my grandmother had prepared.
I sat in the back of the ambulance and held her elegant, soft hand all the way to the hospital. I couldn’t bring myself to say anything to the paramedics about her history. I should have given them a general picture at least. My throat felt like it was closing in on itself, and I felt so very alone in that moment, ensnared in my own self-destructive thoughts and flashbacks.
***
We were ushered toward the triage nurse’s station. The ER was eerily quiet, probably because it was fairly early in the day. The air-conditioning was jacked up, as usual. The characteristic hospital smell infiltrated my nostrils once we entered and left me feeling unsettled. A mix of cleaning supplies, body odor, and hospital food trays, the smell triggered vivid memories of my own admissions.
A young, sympathetic triage nurse weighed her, and took her vitals. My aunt weighed
fifty-five pounds, and her blood pressure reading was so low the nurse had to check it three times to make sure it was accurate. What shocked me more than the alarming status of her vitals was how her body had survived the self-inflicted abuse for this long. She was so close to death that I doubted she would make it out of this relapse.
After a battery of tests to check her physical health, the doctor came to talk to me. Things weren’t looking good, he said. She had kidney damage, and her other organs were also starting to fail, especially her heart, her brain, and her liver. He said they were going to do their best to stabilize her, but to prepare myself for the fact that she might not make it through the night.
I went numb. I had been expecting this, yet it still came as a shock to hear it put so blatantly. After years of seeing her fight the illness, at the same time fighting my own anorexia, an apparently false sense of invincibility had set in. Anorexia didn’t really kill people, did it?
***
They put her up on the medical ward, under an involuntary psychiatric treatment order, and tried to get a needle into her so that they could start her on IV fluids. However, her blood vessels were so tiny and delicate that the needle kept causing them to burst, and her hands began to puff up like balloons from all the fluid leakage.
Next they tried a feeding tube. She made feeble efforts to fight them off once she realized what they were trying to do, and even though she was severely dehydrated, I saw a tear begin to form in her right eye. Her distress frustrated and saddened me. She should have been fighting to live. Instead, she was fighting the people who were trying to save her.
Once the feeding tube was in, they tried getting some Ensure, a meal replacement drink, down the tube, with little success. Her stomach appeared to be rejecting it. I knew the risk of refeeding syndrome was high in her condition, so the staff had to proceed slowly and with caution as they reintroduced nutrition into her system. It would take time, assuming her body had the strength to recover.
***
Miraculously, my aunt survived the night. She had a nurse coming into her room at regular intervals to monitor her vitals, to make sure her blood pressure didn’t drop too low and that she was getting enough oxygen. I had said my goodbyes to her, in case she didn’t make it through the night, although I knew she couldn’t understand much of what I was telling her. She was loopy and couldn’t concentrate on what I was saying.
I had been told that her brain, starved for nutrition, was shutting down the centers responsible for higher order thinking in a desperate attempt to conserve energy. I understood what it was like to live in the brain fog induced by starvation and extreme depression. I had been through this before myself, although not quite to such an extreme extent.
I was in such a hurry to get back to the hospital to visit her that I nearly forgot it was July fifteenth, my twenty-fifth birthday. I was relieved to find out that things were starting to look up for her. They were able to get some Ensure down her feeding tube, and had finally found a vein in her arm that didn’t burst when they put the IV in, so they were able to get some nutrients into her that way as well.
I spent the day with her, watching TV, doing her nails, and going through old family photos, as we liked to do together. She was in a private room, so we had some time alone — excluding the nurses who were coming in to check on her every fifteen minutes. I was desperate to do anything I could to make her feel less scared, sad, and isolated, as she sat there tied up to all sorts of medical equipment looking at me with those gentle, yet exhausted eyes.
That night, I went home to bed more hopeful. I remembered one of my aunt’s favorite quotes: “Hope is the thing with feathers, that perches in the soul, and sings the tune without the words, and never stops at all.” Although sometimes I had felt like she was giving up, I knew that deep down she was a fighter. After all, she had managed to battle her mental illnesses for decades, even when all the odds were against her. I knew she would want me to be positive and have hope that things would get better, not only for her, but for me as well.
***
My ringing phone woke me. I checked the time – 3:30AM. My heart sank. As I feared, it was the hospital calling. My aunt had just passed away. Her heart rate and blood pressure had dropped unexpectedly about half an hour ago, and she had gone into cardiac arrest. They had been unable to revive her. They needed me to come in and sign some papers in order to get her body sent to the funeral home.
All I could answer was a choked “OK” before I hung up the phone. I hated myself for the relief I felt that my aunt was gone. Although I felt tremendous sadness, after twenty years of living in the throes of severe mental illness, her suffering was finally over. She was now safe.
She would never experience the crippling lows of depression again, nor the emotional pain of waking up every morning and hating herself and her body. I knew all too well that when you have anorexia, there is never such a thing as “thin enough.” The illness will keep lying to you, telling you that you are too big, that you take up too much space, no matter how severely underweight you are.
Feelings rose and fell within me. Anger at the universe for not giving my aunt more strength and motivation to smother the self-destructive voices in her head. Despair that she was now another statistic: one of many who had lost their lives to mental illness.
***
Nearly a year later, on my twenty-sixth birthday, I went to visit my aunt’s grave. I sat over her grave, listening to the wind whistling through the massive oak trees and the crickets chirping, thinking about how far my life had come within the span of a year. After deciding to go back to school to earn my master’s degree in counselling psychology, I met a really sweet guy in my program who was patient with me, accepting of my quirks, and supportive of me in my recovery.
Although I hadn’t gained any weight within that year, I also hadn’t lost any weight, which was a big achievement for me. I was celebrating my second year hospital-free. I had finally found a combination of medications that helped to lift the smog of paralyzing depression and anxiety that had been clouding my thinking for so many years. My mind felt so much clearer. Although I was still grieving over the loss of my aunt, I was finally coming to terms with her death.
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I still feel my aunt’s presence, and I know she is watching over me. I can feel her guiding me, soothing me in those moments when I am paralyzed in fear. Fear that I won’t be able to cope with the everyday, inevitable life situations that often pose immense challenges for those with mental illness. Her encouraging voice is present in me every time I decide to eat, despite every fiber in my being screaming at me to return to the false security of being severely underweight. She is present in me every time I leave the house despite feeling like I want to hide away in my room wallowing in my depression.
I have learned that these little, daily choices, such as changing my clothes, showering, feeding myself, and forcing myself to go out and interact with people, are what recovery is all about. I have discovered that I am not a loner. My depression isolated me, preventing me from connecting with those around me.
Just as my relapses consisted of repeated, unhealthy decisions that lead me into a gradual, then sudden downward spiral, my recovery has been the same. I started making tiny, positive decisions every day, attempting to incrementally put back the pieces of my shattered life. One day, I woke up and realized that I was living the life I had always hoped I would have, but never thought was possible. I can finally say that I wake up in the morning wanting to fight for my life and my health.
Life can be hard, but it is worth the struggle.
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Header image courtesy of Jean-Francois Lepage. To see his Photography Feature, go here.
Athena is a 23-year-old psychiatric researcher based in Halifax, Nova Scotia. She will be graduating with her master’s degree in psychiatry research at Dalhousie University in the Spring of 2020. She has an undergraduate degree in medical science with a sub-specialization in psychology and neuroscience, also from Dalhousie. She has extensive lived experience of several severe mental health conditions and has spent over a year in hospital since the age of 16. She is a leading mental health advocate in her community and aspires to one day be a psychiatrist.
Through publishing this story, she hopes that people will better understand what life is like for those who have severe and debilitating mental illnesses, and how recovery is never linear and never the same for everyone – it is a unique process with ups and downs. But despite its challenges, the message she hopes to convey to her readers is that recovery is possible. Nobody is ever too far gone or too sick to recover and get their life back.