“The books we need are of the kind that act upon us like a misfortune, that makes us suffer like the death of someone we love more than ourselves, that make us feel as though we were on the verge of suicide, lost in a forest remote from all human habitation.” ― Franz Kafka, The Trial
For the most part I am hopeful and happy. But I must admit that there are times when the darkness gets in and my new identity as a cancer patient is akin to a Kafkaesque nightmare. As I write this I am in the heavy embrace of darkness. I have been ill for weeks with nausea, severe anxiety, insomnia and pain. As a result, I’ve retreated to my bed to contemplate time and Kafka. How long will I feel sick? Is it almost over, or is this my new normal? How long will I have cancer? Am I almost cured or will these maniacal cells hang out in my body for the rest of my life? How the hell did this happen? Why do I feel like a character in one of Kafka’s stories?
Although my goal is to write about cancer with humor, and I’m often able to do so, cancer isn’t fun. The reality of having your own cells turn against you is horrifying. Cancer doesn’t follow a protocol, and therefore can’t be trusted. Where do you turn when you can’t trust your own cells? It’s unsettling, and it can be depressing. I want to share these thoughts and feelings because there might be others out there who feel similarly – and there is comfort in shared misery.
I’ve only read two of Kafka’s works, The Metamorphosis and The Trial, and although it’s been nearly 20 years since I read them (thank you High School English class), I’ve never fully recovered from the dark emotions invoked in me by these texts. I’m haunted by Kafka’s portrayal of the nightmarish frustration and powerlessness his characters’ experience while living in a mundane, absurd and oppressive world.
I lie in bed contemplating these two stories, and I feel comfort and kinship in the misery of others – thank you Joseph K. and Gregor Samsa – although I draw connections from my life to yours, your lives are much worse than mine, and I am grateful for that! That’s some hard core schadenfreude. And yes, I am in bed talking to fictional characters, but I feel entitled to a little crazy these days.
Kafka’s The Trial and My Search for a Diagnosis
In the Trial, Joseph K., the protagonist is on the road to career success, until one day he is arrested for no reason. He is put on trial but is never told why and therefore becomes depressed and frustrated because he cannot properly defend himself against a crime which is never revealed to him. One year later, he is killed in the name of the law. Terrifying.
Instead of fighting to defend my innocence from a crime never revealed to me, I was fighting for my life against a disease that was never revealed to me. How could I find health, when I never knew what was ailing me?
Kafka’s the Trial reminds me of my quest for a diagnosis. I was highly ambitious in my twenties – I worked hard at university and had several fulfilling careers, volunteered, and had a full social life – but I was also very sick and the medical system ignored my pleas for help. I was left feeling lost and a little crazy, because I knew something was seriously wrong, but every specialist told me I was healthy. I started to believe I was dying, and I feared I would die before I got any answers – or was I simply crazy? I really didn’t know. I knew that my clock was winding down, and it was like screaming into the abyss. Imagine the horror of feeling your body and mind engulfed in illness, meanwhile every doctor you go to for help tells you that you are perfectly healthy. It is the definition of a Kafkaesque reality.
I can’t tell you when my symptoms began, because I was always a sickly child, but my symptoms worsened in college in 2001. That was when my quest for answers really started, however there were times when I would give up – telling myself I simply had a weaker immune system compared to others and I had to adapt to that reality and accept the fact that I was sick most of the time. Everyone has their burdens to bear, right?
My endocrinologist has mentioned that it’s likely that I was living for years with an undiagnosed form of chronic thyroid disease which finally turned into cancer. I wasn’t diagnosed with thyroid cancer until December of 2015. Papillary thyroid cancer tends to be slow growing but my flavor of disease is unique in that at the time of my diagnosis my cancer had metastasized from my thyroid to 21 nodules in my neck, and five in my lungs. Therefore, it’s likely that I’ve been hanging out with cancer for 5 to 10 years. I am annoyed by this, when imagining what I could’ve achieved if I were healthy. I am angry that no one listened.
Upon diagnosis, I felt a great sense of relief and hope. Relief that I wasn’t completely insane – that my illness wasn’t fabricated by my imagination. And hope that I would soon feel better – all I had to do was endure and recover from surgery and radioactive iodine treatment. I expected that my life would soon be exponentially better because I would be disease free and healthier than ever.
But beware of expectations, as they tend to disappoint. And that is where I am now – I am in the land of frustration and disappointment as it has been nearly 10 months since my surgery and I still feel ill. I am an impatient patient. And I fear the metamorphosis that is taking place in me due to my new identity as a person with cancer.
Kafka’s The Metamorphosis and My Own Metamorphosis
In Kafka’s the Metamorphosis Gregor Samsa lives at home with his parents and sister. He hates his job as a traveling salesman, but does it out of family obligation to earn wages. His only goal is to provide for his family. Until one morning he wakes-up transformed into a gigantic insect-like vermin. Due to his disgusting appearance he can no longer work and becomes a financial burden to his family. He eventually starves to death in his room and the maid cleans up his body. Instead of grieving his loss, his parents and sister are relieved by his death.
A meaningless life is tragic and it terrifies me. And even as a teenager when reading the book, I knew that focusing only on the acquisition of money would lead to an empty existence. And I remember hoping and even expecting that the transformation of Gregor’s outer appearance would force him to develop into a better person, on the inside where it counts. However, I was almost traumatized when Gregor’s values never really changed. He never even asked why or how he had transformed into a horrific creature – he just accepted it – like he accepted his pitiable existence before his metamorphosis.
Metamorphosis means change. And even though he changed form, Gregor never really changes as a person. I am terrified that I will someday give up and just accept a hapless existence. Instead of fighting to make a positive impact on the world. I am exhausted by my cancer treatments – and I lack the energy for volunteerism, creativity, and socializing – is this the prologue to a boring wretched life?
I worry about how my new identity as a cancer patient has changed me. I’ve heard people say that cancer was the best thing that ever happened to them. I want and half expect cancer to turn me into a better person. However, I worry that the changes and the challenges of my cancer treatments are making me into a lesser human being.
For example, before my diagnosis I focused on travel, creative writing, science and trying to improve both myself and the world through public health work and teaching. I cared about intellect and compassion, building community and friendships. I strove to have inner beauty, and therefor rarely focused on my physical appearance – I didn’t wear make-up or do my hair.
However, now I consistently think about my appearance. I wonder if people see the scar across my neck and the three drain scars on my chest and know I am cancerous. When I look in the mirror I see my scars, and my new chin hairs and half mustache (thank you hormone therapy), and my dry skin and hair (thank you radiation) instead of seeing the beauty of being alive.
I wonder if any man will ever find me attractive again, or if I am now damaged goods? I am pleased, and at the same time ashamed, that I still have my hair because thyroid cancer doesn’t respond to chemo therapy, and therefore I’ve been spared its toxic effects. What fresh hell is this, that I am now obsessed with my own appearance? Perhaps it’s because it’s one of the only things I have the power to change and control? I can’t change how I feel, but I can change the way I look.
I feel completely out of control because my body has been taken over by hormones like a demonic possession. I can’t predict or even control my own emotions anymore. I am on a high dose of thyroid hormones to suppress the cancer so that it doesn’t grow and spread. And it’s working which is awesome – but in the meantime I’m a total lunatic which is cumbersome. I am filled with anxiety and paranoia. I can’t sleep at night and I think the lack of sleep and anxiety is causing me to have nausea and an upset stomach. I’m like a hormonal teenager in menopause. I get hot flashes and have night sweats – both of which are unpredictable and uncomfortable. I burst into tears for no apparent reason. And I don’t even know why I’m crying. Is it simply the hormones, or am I depressed?
Depression isn’t in my wheelhouse so I don’t know how to deal with it, if it is the cause of these outbursts. Whenever I’ve been unhappy I’ve been able to fix it by moving, or getting a new job, or breaking up with the source, but I can’t break-up with cancer so I am feeling helpless – and that’s also not in my wheelhouse.
But the worst effect is the impact my cancer diagnosis is having on my identity and self-esteem. I used to identify as a kind, collaborative, highly productive and valuable employee – however I am now scared that I am the co-worker who cries for no reason and is a mess. I am the co-worker who is always sick. I am the crazy person who tells everyone she has cancer. Oh yeah, I meant to keep my diagnosis private because that’s the socially acceptable protocol, but I can’t help but share it. It’s like an involuntary tick, “I have cancer, and I can’t stop talking about it!” It just comes out despite all efforts to keep it in.
Will I be able to redeem myself to my friends and coworkers once these treatments have past and I feel more like myself again, or will the memory of my pathetic outbursts be forever burned into their minds? Will I need to go into some form of a cancer witness protection program so that I can re-invent myself as a normal person once this is all over? And again I am focused on how I appear to others, instead of focusing on something more worthwhile – like the fact that the radiation seems to working, my cancer burden is decreasing, and I have wonderful friends and family. These are all good things. Why can’t I focus on the good things?
Where did my positive outlook go? Was it removed with my tumors? Is this a passing phase, a side effect of hormone overload, or is life truly difficult, absurd, and terrifying like in Kafka’s writing? Am I being changed by cancer, or is this simply one of the growing pains of aging?
And yet, who knew that Kafka, of all writers, would bring me comfort in the darkness? I mean, cancer is terrible, but it could be worse. I could be on trial for a crime I never committed, that is never revealed to me, or I could’ve woken-up to find myself transformed into a large disgusting cockroach – only to learn that my life is meaningless and lacks love – ok maybe that’s impossible and would never happen, but it sounds horrible and worse than cancer.
I don’t know that I’ll ever revisit these texts or read any more of Kafka’s writings, as he has made enough of an impression on me already. But it is nice to have a word that describes what I am feeling – cancer is at times Kafkaesque – a nightmarish situation which most people can somehow relate to, although strongly surreal.
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