Surviving Alone: Phases to Embracing Struggle
Six years ago I was diagnosed with Hodgkin's Lymphoma. I was administered chemotherapy; chemicals in the form of a cocktail given intravenously. Chemo "therapy" is oxymoronic due to the poisonous and carcinogenic nature of the chemicals. This poisonous cocktail combined with the word therapy, meaning treatment, cure, shows the oxymoronic nature of the term. The aim of chemotherapy is to kill all malignant cancer cells along with the very vital cells of my being; the cells that make me me.
As I had anticipated after "treatment" there were side effects, which no doctor addresses or even care to hear about. What I had not anticipated was the psychological downward spiral that was ready to take its toll on me leading me to anxiety, loneliness, mourning, and depression for years to come. Unassuming friends and family failed miserably in their attempts to comfort me.
"Do you think these symptoms you have are only psychological?"
"There's nothing wrong with you."
"You do this to yourself, it's all in your mind."
"Chemo was five years ago. You shouldn't have any more symptoms."
"You shouldn't have taken Chemo."
"It's not that bad."
"Why would you need a wheelchair?"
"Why are you just sitting there letting the kids do this?!"
"You should get up and help the hostess."
"What do you want me to get you now?"
"You keep calling me in from the other room to hand this to you when you can reach over and get it yourself. "
I witnessed my family's longing for me to step through this imaginary glass wall and reunite with them again.
Over the years, during the episodes where I lay paralyzed in my bed, I could view my husband and children behind an imaginary glass wall. I witnessed caretakers struggle to take care of my family when it came to me so easily. I witnessed my family's longing for me to step through this imaginary glass wall and reunite with them again.
This wall not only kept me from them as a physical barrier but also entrapped me in an empty confined cell if you will, with the self-destructive thoughts and emotions that I endured alone.
"Can you tell me why you are crying again?", my husband demands. "Okay, so now you're mad at me I guess."
I could see the glare from this glass wall between us clearly. Listening to my husband's frustrations as he made his futile attempts to enter into my glass bubble only sank me backward into a well of shame. The shame of perceived inadequacies as a wife, mother, and overall cause of frustration for my family. This would always be a slow free-fall until I'd hit the familiar feeling of worthlessness.
Worthlessness. This is where things become dark and silenced. This is the place I feel most alone. The bottom of this well is the most painful place and of course, at this point, it becomes logical to me that the only escape from this overwhelming shameful feeling of worthlessness is the fantasizing of my own suicide. This is only a fantasy; a temporary means of escape from all the emotional pain but also a refocusing of my own anger and frustrations directed violently at myself and my shortcomings.
Phase 1: Anxiety
"It appears the tumor will remain 1cm in size. At this point we will wait and monitor it, canceling further (unnecessary) therapy. ", my oncologist explained.
My initial emotions upon hearing this news were gratefulness and relief. With treatment, I had overcome the lymphoma. I was grateful to receive a second chance at life. I was relieved that treatment was over. I could now walk away and put this horrible experience behind me.
Life would now resume as it always did. I would go back to commuting overseas every month to stay with my husband. I would raise my children the same way both privately and publicly as I always did in the past.
I approached daily struggles and hardships with the same strategies and expectations as before chemotherapy. After all, I was now "healthy".
My anxiety's secret advantage in this was that I was unaware of it for years.
It took several incidents of my toddler's public tantrums before I realized I was facing my previous life with a newly, less-equipped body. Chasing a toddler at weddings and airports was nothing new to me, but it was now associated with inefficiency, which appeared to those who witnessed it, apathy on my part. Most people were unsympathetic in reaction to my incompetence as I appeared as normal and undamaged as my peers. I would become the center of negative attention in these scenarios. As a result, I would experience a type of conditioned anxiety. My anxiety's secret advantage in this was that I was unaware of it for years.
This anxiety had developed long before post-treatment. It began showing itself hours before my second chemo session and would present itself each time I would revisit, what seemed to me, a Guantanamo Bay-like torture camp. As I would anticipate the acute side effects of each session my reactions to simple human interactions were exaggerated and would mimic someone held at gunpoint. I was always polite and grateful to my caring health care workers but noticed it was difficult for me to follow their instructions. I was nervous and distracted. I would experience shallow rapid breathing, sweating and tremors. Many times I would break into spontaneous crying.
Spontaneous crying became the new thing for me in the years that followed as I would become confused after each stressful event with my toddler. In the beginning, I would do it in bathrooms or anywhere that was public but secluded from strangers after the event passed. Eventually, it became so normal to me, I would find myself crying on the floor in front of an airplane gate with my bags and son splattered across the floor with strangers bypassing and spectating, questioning and judging.
Eventually, days before a planned flight I would become moody and overly stressed. I would panic at the thought of going out to the mall. Social events became a burden on me. The idea of isolation appeased me, but only after so many years of unsuspectingly enduring this post-treatment hysteria.
Looking back, much of my suffering could have been prevented with better awareness and preparation. Much like a person who lost a limb, I would now have to readjust my techniques with oncoming obstacles. Unlike the former, however, my loss was phantom and unrecognized by myself and all others. Therefore, it was left ignored and unaddressed. I was subject to repeatedly unwanted and irrelevant advice from unaware friends and strangers who questioned my struggles. People advised or judged me as though I still had all my limbs.
The Hypotensive Episodes
One of the many unpleasant side effects during my chemotherapy treatment was morbid, coma-like fatigue, which I had attributed to the regimen's nonspecific attack against my healthy blood cells. At first, I ignored this side effect as I assumed it would diminish once I ceased therapy.
However, as months and years passed after chemo, I began to question this conscious coma, as it was accompanied by squeezing, angina-like chest pain, and arrhythmias. I approached various types of practitioners with my concerns only to discover that they themselves did not know where to begin.
EKGs, echocardiograms, and various tests showed normal. It was only after hundreds of these episodes did my husband discover I was experiencing low blood pressure during an episode. My blood pressure readings during these episodes, which would occur weekly or biweekly and last one to 3 weeks at a time, would drop as low as 80/40.
I was experiencing these episodes in the midst of my normal life routines unknowingly. Without enough blood pressure, I would become weak, faint, and underactive to the very scenarios that led up to my anxiety.
During these episodes, I immediately felt unable to hold up my own weight. After laying, my heart begins to race tirelessly in an attempt to compensate for the necessary blood flow to the rest of my body. This may go on for hours at a time and I begin to feel the exhaustion one might feel after a long run. Nausea, blurred vision, dizziness, angina, arrhythmias, loss of blood flow in the limbs, discomfort, pain, and yawning are some other effects. Sometimes I managed to crawl to the bathroom. Other times the kitchen floor became a rest stop, as I fed my kids while laying flat across it.
Upon the discovery of this hypotension, I returned to physicians for help in investigating the underlying cause. Unfortunately, most of them downplayed my complaints as nonthreatening and offered me superficial solutions that I had already tried (taking iron, multivitamins, increasing salt, and hydration). As each practitioner closed the door in my face I became increasingly frustrated. I learned that most of them did not comprehend the serious and painful consequences of hypotension and so, I endured these episodes untreated for years to come.
Phase 2: Loneliness
"It sounds like you have some type of depression. Maybe you should join a Cancer support group." Well-intentioned and concerned as ever, my best friend of 30 years attempted to advise me.
From my side, her words cut through me like a knife. In my fragile emotional state, what I heard her say was very different from what she had actually said or meant. In my head, she might as well have said, "You're on your own with this one."
My friend and I were always able to see things from the same perspective. We supported each other through bad relationships, weddings, and funerals, traumatic events, etc. She was there for me when I got sick. She was always my defender. My friend could always sympathize with me. As others in my life had failed to see my perspective on this subject I was certain that her sympathy was guaranteed. At this point, my friend was my last lifeline at feeling understood.
Her words were a slap in the face at the realization that I was in fact alone. How could she possibly see it through my eyes? She was never present during the hypotensive episodes or the anxiety attacks at the airports with everything scattered on the gate floor. Come to think of it I was always alone. I was alone in the airports, alone at home with kids in my comas, alone in my thoughts and struggles post-chemo after I became "healthy".
That is the loneliest part. After the treatment is over friends rejoice then leave. Now I am alone to cope with the consequences. At the root of this loneliness was the feeling of being misunderstood and therefore, misjudged by my family, friends, peers, strangers, etc. I felt misunderstood and misjudged repeatedly on small and large scales during each struggle.
I hesitate to call this feeling of loneliness a phase, as it laces itself around each phase of emotion. This loneliness served as the very lubricant that would ease me back into my descent of depression, worthlessness, and mourning. Even there, it would accompany each emotion. It was the most horrifying of my emotions as I realized my personal support group could no longer relate to me. Previous to this realization, I was always distracted by the struggle itself and still unaware of the debilitating emotions that paralleled it.
Phase 3: Depression
Immediately after the realization of my loneliness, I fell into a depression. My friend's words were just a trigger to this already imminent descent. In this phase, my emotions would shift between sadness and anger. I felt very sad that I was unable to find a friend who could recognize the reasoning behind my frustrations. This is where I would sink deep in my isolated well, trapped with feelings of worthlessness and anger.
Most times I found my anger directed at myself.
I felt worthless because I saw myself as damaged and inefficient. My frustrations made me very angry and resentful at the effects of my chemotherapy and I did not know where to direct this anger. Most times I found my anger directed at myself. As my anger intensified I began to become numb to anything that I would otherwise find harmful to myself. I, therefore, became self-destructive and apathetic to goals that would otherwise motivate me.
It was at this point, in the midst of my hypotensive episodes, that I would begin to question why this was happening to me. With no answers, I would become resilient to the idea of being crippled. I would find myself sobbing on the kitchen floor face down in front of my kids resembling a child experiencing a temper tantrum. I felt defiant and refused to yield to my fate, while at the same time, fearing that God judged me as ungrateful.
Socially, I became overly sensitive to others' remarks and criticisms. I felt sorry for myself, victimized and misjudged against unfair standards. I noticed I wasn't as efficient at running my household or disciplining my children as the other mothers around me and became overly self-conscious. Now I would begin to avoid social interactions not only to avoid the prior feelings of anxiety but to avoid shame as it was easier to hide at home instead of being compared to anyone else.
At this point, I clearly understood my emotions and was not distracted from them like before. I awaited the arrival of the last emotional phase of acceptance. Disappointedly enough, the next phase was not it.
Phase 4: Mourning
Although a category of depression, I attribute my mourning a phase of its own. My depression began with sadness and anger. I would cry at times. The depression tears appeared superficial compared to the ones in my mourning phase for I was no longer sad, but grieving.
This is the phase where I could hear my own sobbing, crying out loud like a baby, as I carried out my daily activities. Unlike the spontaneous crying with my anxiety, this crying would emerge slowly from beneath a thin surface of normalcy, unleashing a lava of grief. I would carry myself around with this grief, sobbing in every quadrant of my home. I would sob while washing the dishes. I would sob while doing the laundry, in the shower, getting dressed. I would sob even as my children mirrored my emotions back to me, bewildered.
During this phase there were moments of truth; a glimpse of the bitter reality that I had defied for so long. They were only glimpses at a time, as my mind was still unable to carry the weight of it. With each glimpse, I would cry for days until I became tired only to catch another glimpse and begin again.
It was endless. It seemed as though it was impossible to finish my tasks or move on in my day without this sobbing. It was however necessary, as it served as a vehicle to my path of acceptance.
Phase 5: Acceptance
As I wrote my thoughts out and saw them on paper I realized for the very first time that this is real. This really happened. For some time I mourned my hardest at the reality; what I had lost is in fact gone.
Arriving at this conclusion, came the next realization: I have been in a chronic state of denial.
I can relive the mortifying moment I read my first PET scan. The words "neoplastic", "malignant", and "jugular vein" pierced my eyes, blurring all the writing behind them. Horrified, I immediately understood that my body had been secretly invaded all this time by a lethal enemy on the inside. The words meant this enemy was now entangling itself around me and literally had me by the throat.
Immediately after, I was stupefied as I called my brother for help. "Lymphoma doesn't mean cancer, right?!" Of course, it did. I was a pharmacist, well-educated on the topic. Why did I repeatedly demand an incorrect answer from my brother when I was already knowledgeable of it? I was looking for other alternatives. My mind could not put cancer and me together. I was in denial and have been ever since, as there was no rationale for my losses from chemo. I could not grasp my reality. Although I longed for it, my acceptance would not arrive without the disappearance of my denial.
However, the disappearance of my denial was only the first step in the path to acceptance. Reality is so terrifying at times that denial can provide a temporary means of escape in an effort to avoid the pain, but only for so long as it would eventually land me back to thoughts of worthlessness. Without the next step, I would snap back into my denial by default. To face my reality I would need a strategy to deal with its harshness instead of fleeing from it, thereby allowing it to shove me down a well.
What you are thinking, is what you are becoming
- Muhammad Ali.
"What you are thinking, is what you are becoming"- Muhammad Ali. Such simple words convey a wise concept. During my mourning phase, I would hear these words repeatedly as my subconscious was tossing me a rope ladder to aid me out of my well.
This quote was stored in the back of my mind and until now I only had a one-dimensional understanding of it. As it played over in my mind I began to ask myself questions which eventually gave me a deeper meaning. How did Muhammad Ali come to this conclusion? He was a man who endured hardships both in his career and personal life. He fought in the ring but fought to stand up for his principles against all odds as well. Before arriving at the answer I had to ask myself another question: how does one arrive at what one is thinking?
Muhammad Ali was known as a man who stood up for his principles. Initially, he was not even aware of those principles until he was faced with a dilemma. He struggled and suffered from this dilemma only to arrive at his present thoughts. It was only then that he could act upon those thoughts and become.
As I was becoming certain of my reality, my mind used my long time admired role model as an example to help me face my struggles. For if his own personal struggles were the catalyst that exposed him to his own principles, leading him to what he was thinking and then becoming then I could learn this from him. I could also hold the conviction, as he did, that I am able to stand up for my own principles amidst my post-chemo hardships. With this belief, I would gain the courage to finally face my opponent instead of running from it.
I now realize my limitations do not make me worthless, but rather, all the more worthy. When things were easier I was happier, but I lacked the principles and discipline which bloomed from my struggles and made me who I've become today.
I am thrilled at the coming of this realization and I once again value myself. For me, this realization was the rationale behind all my suffering. My long-awaited acceptance has welcomed me with tangible happiness. For the first time, I feel grateful and joyful for my good days while being able to gracefully embrace my struggles.
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