What do you remember from life at age eleven? Do you remember your sixth grade teacher? Do you remember your crush? This is typically a time in which we start to notice our bodies changing at rapid degrees. Our sense of self-consciousness grows with new acne and hair and hips and breasts. Our friends and school are our world. We want to experience more than what is in our homes, we yearn to become teenagers like the ones in the movies.
This of course is all assumption on my part based on observation and what I’ve learned in developmental psychology on my road to become a clinical social worker. It’s not what I experienced in my life. Age ten and half of my eleventh year was clouded with another focus–a frightening focus: watching my father die.
My parents had divorced when I was much younger. I was born in August and he was out of the house by New Years. He left for a year, and later came back for a year before an eventual divorce that left my older sister and me leaving Connecticut to visit him in New York City every other weekend. He dated and eventually met my soon-to-be stepmother. She and her two children, a girl my age, and a boy two years younger, were, at a glance, everything my Italian-Irish sister and I were not. They were blond, blue-eyed, proper, religious, and bitter. These kids had lost their first father to illness. They didn’t want a new one, and I just wanted mine back.
I was uncomfortable in the home they created in Bronxville, New York. I missed the weekends of my sister and I getting his full attention in the city. He may have moved into a big beautiful home, but I’d take the bunk-beds in the corner of the one bedroom in the Financial District over that any day.
I looked up the world malignant while writing this, and Google comes up with one word for the first definition of the adjective: malevolent. Synonyms: spiteful, malicious, evil-intentioned, vindictive, vengeful, mean, nasty, hurtful, mischievous, wounding, cruel, unkind. Then the second definition: virulent or infections. Synonyms: invasive, uncontrollable, dangerous, deadly, fatal, incurable. Both of these definitions, and all of their subsequent synonyms, were correct.
My father tried to integrate us into becoming a family, but it wasn’t working and it never did. My stepsister was cruel and heartless, and looking back, I realize she was probably dealing with a lot of feelings of having these strangers enter her life in the absence of her father and knew no other way to express that. I wanted to see my dad (and only my dad) each weekend I went there. I grew to have a lot of anger and resentment towards my father for his decision to bring these people into our lives, forcing their new lives upon us. Feelings that grew and festered over time were not expressed until it was too late.
At the end of a family vacation at age ten with my father, sister, stepmother, and step- siblings, the two adults rounded us up to give us the news. My dad was sick. Really sick. He was going to need treatment. I have no recollection of what was actually said. I don’t remember if I asked any questions, I don’t remember if anyone asked if he could die; I just remember confusion and numbness.
It was Gliosarcoma, a rare malignant brain stem cancer. I looked up the world malignant while writing this, and Google comes up with one word for the first definition of the adjective: malevolent. Synonyms: spiteful, malicious, evil-intentioned, vindictive, vengeful, mean, nasty, hurtful, mischievous, wounding, cruel, unkind. Then the second definition: virulent or infections. Synonyms: invasive, uncontrollable, dangerous, deadly, fatal, incurable. Both of these definitions, and all of their subsequent synonyms, were correct. These all express my experience, not only of what I saw this disease do to my father, but what it does to someone who witnesses it.
He received chemo treatments, eventually becoming hospitalized. I don’t recall meeting any of his providers. Hospitalization led to home care, wherein I can only vaguely remember seeing the person there who helped him once or twice. I did not have a relationship with her.
One of my last memories with my father was taking a walk alone with him in the small park across the street from their home. He was already in home care and this is one of the few times I saw him out of bed. We walked and talked. I have no recollection of what we spoke of.
It’s quite possible it was drowned out by what I was seeing–he could barely walk. Hunched over with no muscle or fat left, his clothes hung on his body like a hanger. I helped him walk, and it was frightening. I watched something, someone, who was once a strong, driven force slowly decompensate in front of my eyes.
The morning I was told he was dead, it didn’t really hit me. The words made sense, but they did not truly click or even fully process for me until months to years later. I knew some of the who, what, where of this, but not the how or why. I did not know at that time in my life how important all of those answers would be, how the darkness was accumulating each day, how life saving those answers could be.
Major depressive disorder and generalized anxiety disorder: these are the labels I carry, now in remission. They were given to me at age fourteen, though they emerged the year earlier. I intentionally kept my symptoms quiet because I knew no other option. I idolized my mother’s stoicism and perhaps inadvertently mimicked that. I hid. Pretending all was well when it wasn’t. I also knew how stressful it was for her to be a single mom who worked full-time. I recognized it in the state in which she returned home each evening after a high pressure corporate job. I wanted nothing to do with adding to her pressures. I believe both diagnoses became ignited as a small child: the energy in the clear loss my household faced at my infancy and in the background of a once-diagnosed learning disability, frightening recurring night terrors, a lot of pieces made more sense later on when given these labels and explanations. Slowly seething into something I did not see coming myself.
I hated my dad, but I loved him. I missed him, but I was angry with him. I did not know it was okay for all of these emotions to exist at the same time, so I grew to loathe myself and the peers around me who cared about how they looked; I grew disillusioned with the pop icons who got the world’s attention when people and communities were suffering all over the world. The darkness of anything came to the forefront of everything. A black veil colored my experience and became ever present.
I did everything in my power to not show it. To appear that nothing was wrong, I put all of my energy I had left from constant fatigue into looking bright in my face and of course into school work. I was also so utterly anxious at the repercussions and hating myself more with poor grades, having to catch up, losing myself in the never ending pile of private school work burying me.
I had always picked at my skin as a child. It was not a far jump from picking a scab to creating a wound myself. I wasn’t aware when I started to mutilate myself that “cutting” was a “thing.” Once I did learn of this, I hid it too. The last thing I wanted was to be labeled an attention seeker by peers rather than validated for true pain. More importantly, I didn’t want to have to stop. So this habit grew. I looked forward to the relief it provided. A pain I could control. A reminder that I was alive. It helped me fall asleep at night. No one was going to take that from me. It worked, so I thought I would just use this tool for the rest of my life, that I hoped would be short. I wore sweaters and sweatshirts year round and held my left arm tight to my body otherwise. My mom recalls assuming I was insecure.
I do think back now as a clinician and wonder how much of my emotional struggle could have been prevented, keeping in mind that I do not blame anything on my mother or the other adults in my life at that time; I believe they were doing the best they knew how to in a moment of crisis. My mother recalled to me later that she was in fact intentionally trying to appear strong for my sister and I, not knowing that could lead us to hiding our feelings or expressing them through maladaptive means. What did she know would become of my fate? Finally at one point, my nanny who lived with us saw my self harm, in a moment of what I saw at the time as poor planning, since every energy was put into hiding them. Without her, without that moment, I’m not sure I would be here right now. I had a panic attack; it was the worst day of my life in that moment. All I feared, all I was hiding from, the shame, the guilt, unearthed into reality. It was a feeling so visceral I will never forget it, and yet a moment needed to happen, to get me the treatment I desperately needed. I do wonder however, what other medical and mental health professionals could have done. There are protective mechanisms at play in any traumatic or potentially traumatic situation.
I now practice as a clinical social worker in mental health, addiction, and eating disorders, and I carry my history with me to every interaction. The pain my family and I have felt so deeply in the navigation and management of my own mental illnesses colors my intention and motivation to relieve that from others.
My experience has not been in vain. It is critical that we open ourselves up to the question of what doctors, nurses, social workers, and other healthcare professionals can be doing differently for the families of dying patients and their nuanced home lives.