The Secret

[Continued from previous post]

There’s a Secret I’ve been harboring for years, something I’ve known from the time I was a baby in that part of the soul that remembers all trauma even before memories can be retained by the consciousness; it was then confirmed to me ten years ago. I’ve let the Secret out over the years, little by little to a few members of my family and friends, but it certainly isn’t public knowledge. I’ve always known that at some point I would release the Secret into the world as part of my healing process; until last July I just never thought that healing process would have anything to do with cancer. The Secret has hurt me in ways that few can imagine. Ever since my diagnosis, I’ve redoubled my efforts to find a lasting peace with the Secret, feeling like doing so would yield hidden truths that would aide me in this war against cancer.

When I was two months old, my parents, at the direction of my matriarchal paternal grandmother, took me to an herbalist in Danang, a two-hour bus ride from the dusty village in which I was born, along Highway 1, the main highway the snakes up and down the narrow length of Vietnam.  The old man was offered gold bars to give me an herbal concoction that would make me sleep forever. He refused the gold and refused the job, declaring that he would not engage in such dirty business. My parents took me home to face my grandmother’s bitter anger and hatred.  She would have found another way to kill me, but my great-grandmother got wind of her daughter-in-law’s endeavor from her Danang home and commanded that I be left alone; how she was born is how she will be, she declared. And because my great-grandmother was the ultimate matriarch, her word was law and no further attempts were taken to end my life. Of course, that didn’t stop my grandmother from forbidding my mother to breast feed me (which my mother tried to do in secret but her milk soon dried up) or permitting me to eat only rice gruel while my brother and sister had real sustenance (or as much sustenance as was available under the Communist regime). I’ve written before about how I wasn’t wanted because of my blindness, how I was viewed as a curse on my family, how to everyone in my family I was doomed to a life of dependency, un-marriageability and childlessness and therefore worthlessness. Now, you understand just how true those statements were. No doubt, my grandmother believed she was doing me a favor under the circumstances.

That is the Secret that is now no longer a Secret, that I was the victim of attempted female infanticide. For the first 28 years of my life, it was an event only known about by the parties involved in the deed and my grandfather. My mother told me after I’d shut off the recording device; I’d spent days recording our family history. It was after midnight; the house was long asleep, and I was to fly back to New York the next morning. She said she was telling me now only because my grandmother was dead, that I was to tell no one that I knew of ‘the matter”, particularly my grandfather, father and siblings. Incredibly, I had a sense of what she was about to tell me. I already knew. I could see the scenes play out in my mind’s eye as she spoke; that’s why I believe that the soul remembers trauma long before the mind can retain actual memories,  In the past ten years, I’ve disobeyed my mother as I so often do; I’ve told my siblings recently; I’ve told Josh, of course; I’ve told close friends; and now I’m telling the world. I’ve never mentioned it to my grandfather; he’s too old and there’s no point because I know he wouldn’t talk about it. One day soon, I hope to have the courage to ask my father for some answers, not in anger but in forgiveness, to gain a better understanding of the motivations of those involved, to tell him that I forgive him and my mother for their complicity. I’m just not ready yet. I’ve not spoken of the Secret to my mother since that night, except once in the hospital after my hemicolectomy, after we’d known that I had cancer for five days and I knew she was not handling it well, angry, fearful, guilt-ridden was she. I spoke to her in the privacy of my hospital room, with my sister there as moral support. “You have to tell people that I have cancer, Mom. You need to tell people so they can help you through this.” No response. No surprise. My mother is a very emotionally repressed person. “Mom, you know better than anyone else how strong I am. You know better than anyone else how unlikely it was for me to be where I am today. Considering ‘that matter’ when I was born, you know how unlikely it is for me to even be alive, much less living the life I’m living now.” “Truly,” was my mother’s response, the only word she uttered during that brief conversation as she sat there, bolt upright, her face set in an unreadable mask.

I have disobeyed and am disobeying my mother because I don’t believe in keeping secrets (as I wrote about more extensively in I’m Not Crazy); I think secrets imprison us in shame and anger – I only have to look at my mother to know the truth of that statement – and I myself refuse to live in shame and anger. I believe my mother told me knowing that the Secret would come out, that a part of her wants the world to know because she wants to be freed from her prison and absolved of her guilt; she wants the world to understand that she felt like she had no choice. I believe that the Secret is mine to divulge because the deed was done against me and as I fight for my life I will disclose what belongs to me as I deem necessary and appropriate. My parents will never read this post – there are advantages to having parents and uncles and aunts who can’t read English when one blogs – but I ask that those who know my parents or their contemporaries not speak of this to them. Even though I’m sharing the Secret, it is still a matter between my parents and me. Understanding Chinese culture as I do and the dynamics of my family, I believe there is low risk of my parents finding out about this post because people of that generation never speak of the past, certainly never anything so horrendous from the past; they like keeping secrets. I realize that there is hypocrisy in this request as I am asking that you all keep a secret from my parents, but please indulge me if you wouldn’t mind.

I began to find a lasting peace and those hidden truths in the Secret after an emotionally charged conversation Josh and I had three Sundays ago when we really tackled the bases for my unshakable conviction that I would die from this disease, this conviction that stood at the heart of my depressive state. Josh said that yes, there are people who believe that I will die from the disease, people he and I know, people who look superficially at the statistics and do not see much hope in my situation. But he, Josh, believes in my ability to beat this disease based on a deeper and more nuanced understanding of the scientific studies – it almost felt like Josh was trying to convince himself, to rebut the negativity that had been directed at him, negativity that went to the core of all his fears and doubts, notwithstanding the stoic scientific face he tries so hard to keep in place. Upon hearing about the naysayers, I grew furious, furious first and foremost at those who would say something like this to my already-terrified and beleaguered husband. Then, I was furious for myself. Anyone who really believes at this point in time that I’m going to die from this disease should keep his fucking opinion to himself. Even if Josh were stupid enough to ask someone who is not part of my medical team for an opinion on my long-term prognosis, the respondent should lie! It is one thing for me to proclaim that I think I will die from this disease (as part of the fear- and doubt-filled psychological roller coaster that is living with cancer), but it is a completely different matter to have others express that same sentiment either to Josh or me. In fact, if there are those who don’t believe in me, I’d ask you to stop reading this blog, unfriend me on Facebook, whatever; please leave my life. I am leading the charge in this war. If and until such time as the doctors tell me that I am terminal and that the strategy has changed from fighting for a cure to fighting for time, everyone who wants to be a part of my army must believe in the strategy that I set.

The fury that rose in my chest at hearing what others were saying about my long-term prognosis either directly to Josh or behind our backs was intense, much like the fury I felt when my mother revealed the Secret, much like the fury and rage I felt throughout much of my childhood when I was constantly told in direct and subtle ways that I was different and wouldn’t be able to succeed in anything because of my blindness. The fury ignites a fire of determination in me so intense and violent that it even scares me, where the naysayers become my mortal enemies who I am determined to vanquish, just to prove them wrong. I shudder at the thought of who and where I might have been had I believed all the messages of worthlessness that were directed at me growing up – an invalid dependent on other, uneducated, poor, husband-less, childless, dead. I could feel the pity from my aunts who thought my thick glasses were so ugly and of course ugliness would be a significant obstacle to finding a husband one day. My mother thought it was best for me to continue going to schools for the disabled because she always underestimated my capabilities, but I said no because I wanted to be around “normal” kids and be challenged. My uncles expressed doubts to my father about permitted me to go away to an elite college three thousand miles away in light of my limited vision (not to mention the fact that I was a girl); my father ultimately believed in me despite the doubters because I had shown him what I was capable of. For some inexplicable reason, I was born with a personality that didn’t subscribe to what others thought of me; I have an innate fire in my belly and a relentless determination to live on my own terms, which happened to mean proving others wrong. I refused to allow other people’s opinions to define me. The Secret, as a symbol of all the naysaying in my life, reminds me every day that I was born a fighter, that I am a fighter and that I will always be a fighter. Fighting is what I do. It is what comes naturally to me because it’s all I’ve ever known from the moment my family realized there was something very wrong with my eyes at age one month. Then, I was fighting to demonstrate the value of my life, that I had a right to live. Oddly, it feels like I’m fighting for the same thing now. Just as true now as it was then, I don’t really care what people think; I don’t care if people think I will die from my disease, at least not for my sake; I only care to the extent the opinions upset Josh. I dare those naysayers to doubt me, to express those views to my face, so that I may have the joy of fighting and raging against them too.

Ever since my mother told me the Secret, I’ve wrestled with the sense of betrayal, the anger at my grandmother, the hurt of knowing that I was so unloved and unwanted, the questions about whether those who were part of the deed ever regretted what they tried to do. Mostly, it’s been an unsatisfying one-sided rant against and sometimes conversation with my dead grandmother. When I was diagnosed, the first thought I had was, “She has set out to do what she couldn’t do 37 years ago from the grave.” I was convinced that I wasn’t meant to live, that my life was an accident, that I’ve been living on borrowed time and now she and the Angel of Death was coming for me. How else could I explain having colon cancer at age 37, having a disease that I had a 0.02% chance of developing at that age? How else could I explain the fact that the two greatest challenges of my life have been medical in nature (and yet entirely unrelated) and each has put me close to death?

My mother told me that my grandmother hated me for a very long time, that she didn’t grow to love me until long after we came to this country and I had gained some sight. The odd thing is that when I was growing up, I would have never ever guessed that my grandmother ever hated me. She was a wonderful grandmother to all 13 of her grandchildren, cooking weekly feasts for us and calling us constantly to ask whether we’d eaten dinner yet and coming over to fold our laundry. She had had a hand in raising and caring for each of us grandchildren at some point in each of our lives. During the summer before she died (no one including her knew she was dying), she and I would take walks after dinner in the coolness of the setting sun, her hand grasping my elbow; I was never sure whether she was using me as support or whether she thought she was guiding me; maybe it was a little bit of both. She came with me to the airport to see me off to my senior year of college – she’d never done that before. I remember feeling slightly nervous and nauseous at returning to school after a year of studying abroad and laying my head on her shoulder in the backseat of the car as my dad sped along the freeway during that early hour; I remember hugging her and telling her I’d see her at Christmas and her waving goodbye to me as I boarded the plane (for these were the days before 9/11 when non-passengers could go to the gate). Seven weeks later I flew home to sit at her hospital bedside as she faced her last days, her skin yellowed, her body bloated and her ability to speak gone. I tried unsuccessfully to study for midterms as I tried much harder to process this first death of someone I truly loved, to reconcile this diminished woman who was days from leaving this world with the dominant woman I’d always known, she who had left her little village and everyone she knew in China at age 16 with her future father-in-law to travel by boat to a foreign land where a boy she’d never met waited to marry her, she who had never learned how to read but through her sons and grandchildren found all the success she ever dreamed of, she who had such an iron will that she’d not thrown up once on the fishing boat that took us away from Vietnam even as everyone around her retched into the sea. At the end of the fourth day of my visit, I went to bid her a final farewell, knowing that once I left her side that evening I would never see her alive again. The room was filled with her children and grandchildren. I took her hand – it was too warm and as dry as rice paper. Her eyes remained closed, as they were most of the time now. “I have to go back to school tomorrow, Grandma,” I said in our Chinese dialect. I wasn’t sure she could hear me or if she was even awake. I switched into English then because I didn’t have the words in Chinese, knowing she would understand the universal sentiments if not the words. “I love you, Grandma. I’m going to miss you so much. And I’m going to make you so proud of me, I promise.” In tears, I put her hand back on her stomach and turned away to leave the room, to find a corner in the hallway where I could cry and grieve in solitude. I barely heard the sudden sobs that arose from those in the room as my father grabbed my shoulder and forced me to face my grandmother once more. She’d raised her hand and was waving it ever so slowly and deliberately back and forth in a timeless gesture of farewell. What that simple act must have cost her in terms of pain endured and energy spent I can only imagine. Understanding that this was her ultimate and final gesture of love left me crying for days, months and years afterwards.

I’ve relived my last minutes and other moments with her many times since the Secret was revealed to me, trying to reconcile the woman who hated me with the woman who loved me, trying to figure out whether she in fact hated or loved me during all those years of our life together. The truth is, as my mother said, she hated me and then she loved me. She was the greatest naysayer and doubter of my life but in my relentless struggle to not allow her or anyone else’s opinions of me to shape my life, in the process of living my life on my terms, and fighting, I won her over. Sometimes, fighting on one’s own terms results in unconsciously persuading the naysayers to believe in you even when they don’t want to. Sometimes, fighting with conviction leads to unintentionally winning people over to your side of the war against their will.

So I told Josh as part of our conversation and have told Josh many times since that I don’t care what people think. I care what I think about myself, about these indelible truths that lie within me (even if they sometimes become muddied by the latest difficulties). Josh would say (although we haven’t actually had this conversation) that indelible truths like the fact that I am a fighter may be well and good and they may work when dealing with overcoming a visual disability but such indelible truths about oneself give no assurance about whether I can beat cancer. For Josh, defeating cancer is all about the odds and the statistics; numbers and studies are his God. He has little patience for the untenable and the intangible. He is certainly not alone – consider all the naysayers to whom I’ve alluded. I don’t believe in numbers and stats. You already know that if you’ve read Numbers Mean Squat. According to the numbers, I shouldn’t have colon cancer at my age. According to the numbers, I should have died a long time ago, either at the herbalist’s hands, on the fishing boat that carried me to a new life or as the victim of poverty in Vietnam. According to the numbers, my pediatric ophthalmologist should not have been able to give me as much sight as I ended up having. Legally blind people in this country are woefully undereducated and underemployed and so according to those numbers, I should have never made it to the best institutions of higher education in the world, especially when you factor in the immigrant ignorance that permeated my everyday life growing up. I’ve always felt like my life has been touched and guided by the hand of an undefined God that no one told me to believe in, in a manner that has defied all numbers, stats and probability; that’s a faith I can’t really explain to Josh or anyone else. I just look at the path that my life has taken, a life that began with the Secret, and I feel like I have experienced and know in my soul certain elusive truths that Josh and most others have no inkling of.

My grandmother died at age 72 of colon cancer, almost 18 years ago when I was 20 years old. At least, I think it was colon cancer. By the time my grandmother was diagnosed, her cancer was so widespread that it might have been difficult to determine its primary source; that combined with the linguistic barriers that exist between my generation and the ones before (particularly relating to medical matters) make it difficult for me to say with complete certainty that she died of colon cancer. While it’s possible that I inherited some genetic predisposition to colon cancer from her, no known genetic link has yet been discovered as I am negative for all known genetic markers. None of her siblings, five children nor 13 grandchildren (other than I) have developed colon cancer. Her mother lived to age 93; I met her when I was 13 when I visited my ancestral home in China for the first time. Seventy-two is not an unusual age to develop colon cancer; 37 is. Except for two great-aunts (two of my grandfather’s eight siblings who developed breast and uterine cancer later in life), there is no other known cancer in my very large family. For all those reasons, I’m not convinced that my grandmother and I are linked by some common genetic trait that would explain the colon cancer in me. Nonetheless, I am convinced that my grandmother and I are united in a way that I don’t really understand that defies reason and rationality, first by the Secret and now by cancer; it is a bond I feel based on faith alone. I like to think based on that faith that she watches over me from wherever she is in a way that she watches over no one else and that she’s proud of the woman I’ve become. I like to think that she regrets trying to kill me and that she wants me to live a very long and healthy life. I like to think that her strength, smarts and grit are in me in spades, and that by some ironic twist, because of what happened between us so long ago, she unwittingly gave me her fierce fighting spirit, together with her other good qualities that allowed me go as far as I have and that will see me through this cancer journey. I like to think that her love protects me and will continue to protect me from the ravages of this war in a way that no worldly love could ever do.

I’ve shaken off the feeling that I will die from this cancer. The truth is that I don’t know whether I will die from this cancer. Rather than focusing on what is unknowable at this time, I must focus on what I do know, and that is who I am. In my darkest moments, the Secret reminds me that I am a fighter first and foremost, capable of fending off all the negativity that surrounds me. And in my depression when it feels like all faith is gone, the Secret reminds me that I am indeed a person of a faith that cannot be captured with statistics; it is a faith in myself and in an unseen force that stems from the unlikely events of my life. I know intuitively that what will get me through this war against cancer is my sense of self, but it’s difficult if not impossible to remember oneself in the midst of pain, disappointment and despair. That is why I’ve shared the Secret with you; I hope you who are not the naysayers remind me of its truths when I am lost. I want to thank everyone who has sent me and Josh messages of love and support after my previous post. I never expected such an outpouring. I wanted to thank Diane from Panama City, Florida in particular, who I’ve never met but who sent me a beautiful blue shawl that was crocheted by one of her fellow church members and which was blessed by her priest. In her note to me, Diane told me I should wrap the shawl around myself in my moments of weakness and know that many believe in and pray for me. Because I received the shawl during the throes of my recent depressive state while I was struggling to rediscover me, I will forever associate that shawl with the results of that effort. Thank you, Diane and everyone else who continues to supports and believe.