Going Public

I have chosen to be very public about my disease, first by blogging and now fundraising. And by choosing to be public, by voicing my opinions, by asking for money for research, I have exposed myself to criticism, judgment and anger from people who hate my writing, disagree with what I write, don’t think finding a cure for colorectal cancer is a worthy cause, think that I’m simply seeking notoriety and desperately and pathetically trying to impose meaning on some really bad luck or just simply don’t give two shits about me or what I’m doing.   The criticism is not always voiced but I know it’s there. Indeed, how could it not be? People have independent thought and opinions and it’s inevitable that at least some of those independent thoughts and opinions will clash with mine. While by comparison, the vocal critics are few and the supporters are far greater, it’s always the critics’ words that I remember the most, that disappoint, sting and scar; after all, it is human nature to focus on what is wrong and bad rather than what is right and good. Sometimes, the negativity make me question even the sincerity of all those who proclaim their support.

Add to the criticism, the sense that no one cares anymore and I often wonder why I’m doing what I’m doing. I have long left the warmth of the golden days at UCLA. It doesn’t appear that I’m going to die that soon, contrary to what many (including myself) thought when I was first diagnosed. It doesn’t appear that chemo is going to destroy me as many (including myself) thought when I started down that road. The emergency has passed and life has moved on (more so for everyone else than me). The calls, cards, emails and texts have largely stopped. My blog readership has dropped from its initial high. I’m not writing all this because I want people to flock back to me. Please understand that. Resuming normal life is to be expected and is consistent with human nature. Life has even moved on for me too, sort of. I take my children to school every morning even when I’m nauseous from chemo. I go on vacations. I cook. I do laundry. I go to birthday parties. I meet friends for meals. But in other ways, I have not moved on at all. I haven’t gone back to work and wonder if I will ever be able to do so. I spend arguably way too much time thinking and writing about cancer and reading what people say about cancer. And now, I spend even more time thinking about fundraising, how to raise more funds, how to engage more people, how to write that uncomfortable email. Living with cancer can be lonely and in some bizarre way writing about cancer and fundraising in order to find a cure can feel even more lonely because I feel so alone in all of my endeavors, whether it’s actually fighting the disease or fighting to find a cure for the disease. No, I haven’t moved on, not really. Sometimes, it feels like the space between me and “normal” people (whose greatest worries are about the most mundane matters) is a gaping chasm.

Add to that the knowledge that I am alone even vis-à-vis those who live with the same disease. Most people aren’t public about their disease and don’t blog or try to raise $1 million for research. I am acutely aware of this. That’s when I really question the value of me writing and especially fundraising, because ultimately, there is a compelling desire in most people most of the time to conform to the norm; I am no different. Even from Josh, the person who is supposed to support me most of all, sometimes I’ve gotten the sense when I bombard him with talk about blogging and fundraising after he’s come home from a long day of work, that he wishes I would just focus on reading the latest studies and getting better; I can see the thoughts churning through his brain – why don’t you just concentrate on living instead of your legacy? Then, I wonder the same thing. Of course, such thoughts are really about me thrusting onto him all of my own self-doubts and insecurities. I might not always convey those self-doubts and insecurities on this blog but I have many of them.

The insecurities (and not chemo for a change) made me nauseous and sleepless in the days leading up to my first fundraiser on September 10. I wrote my speech almost two weeks before the event and had shared it with a select few to make sure there was nothing offensive or anything that could be misinterpreted as offensive.

After I graduated from law school in 2002, I went to work at Cleary Gottlieb, a major prominent international law firm, what you would have called a Wall Street law firm back in the day, the kind of law firm that represents the great American blue chip companies and investment banks in their many million and billion dollar corporate transactions and lawsuits that more often than not make the headlines of The Wall Street Journal. For the benefit of those reading this not from the big law world, many law school students graduating from the big name schools often work for a few years at a big law firm to pay off school debt and get some experience before heading off to do other things, like work for themselves, the government, a nonprofit, a smaller firm or a corporation as an in-house lawyer. A small minority actually have the stamina, desire and talent to actually vie and succeed in securing a coveted place amongst the illustrious partnership of these traditional law firms. I stayed longer at Cleary than I ever thought I would. In fact, I was still there when I was diagnosed. I was not on the partnership track as I certainly lacked the stamina and talent to be a partner. After years of slaving away, puling all-nighters and living under the intense stress of working at a place like Cleary – such is an understood part of the bargain when agreeing to be an associate at a firm like Cleary – I had finally found a comfortable niche that was somewhat conducive to being a mother to young children. And then cancer struck. From the beginning Cleary was incredibly supportive. Even so, they exceeded the normal conventions of being supportive when they, in an unprecedented move, agreed to hold a fundraiser for me (after I dug up the courage to ask). All one thousand employees in the New York office of the firm as well as U.S. based alumni of the firm would be invited. That totaled a lot of invitees. The event would be a cocktail reception held at Cleary’s chic office in lower Manhattan, with drink, food and magnificent views of the water and the Statue of Liberty against the backdrop of the setting sun.

As the evening drew nearer, I had major anxiety about speaking in front of my former colleagues and the senior partners of the firm. The senior partners, these incredibly smart, amazingly knowledgeable, enviably articulate people who have argued before the Supreme Court and counseled CEOs of the Fortune 100, who have lived more than I and who on occasion terrified me as I sat before their vast desks, weren’t going to be any less terrifying now as I stood before them to make my case and ask for lots of money – that is assuming they showed up. I was convinced that no one would show up. I was convinced no one cared. I felt like an idiot for doing something so unorthodox. Why was I putting myself through such anxiety and potential humiliation, I wondered. Why couldn’t I just leave well enough alone and stick to writing if I had to do something?   So the doubts and insecurities settled in. My mental state was not helped when I received two rather terse email responses from people I thought would come and care, informing me that they would not be able to make it. Fundraising requires some pretty thick skin and I questioned whether my skin was of the requisite thickness. I begged Josh to reassure me. “Tell me what I’m doing is worthwhile. Tell me that I’m not being a fool. Tell me that what I’m doing matters.” Josh, of course, said all the right things.

Then, the night before the event, I received a medical update from a friend who was diagnosed nearly three years ago with Stage IV colon cancer that had metastasized to the liver. She is the one I care about most in the colorectal cancer community, the one I will grieve for most intensely when her time comes. I met her in person early on in my journey. Something about her angelic beauty, spirit and smile touched my cynical self from the moment of that meeting. I call her a warrior princess, for she has the sweetness of a princess (something completely absent in yours truly) but the tenacity and will of a true warrior. I am convinced that I would have long gone to hospice and died had I been in her shoes. She inspires me and that is a rare thing for me to say of anyone; I have told her I love her, an even rarer thing for me to say to anyone. She, a mother of four boys, at the time of diagnosis was given two years. She has outlived that prognosis by a few months. But the medical update was sobering. After a summer of being in the hospital for various cancer-related complications and with cancer everywhere, the most recent chemo has proven to be ineffective. She is running out of options. Hearing from her on the night before my fundraiser put everything in perspective for me, reminded me that I was indeed fighting for those who no longer have a voice, that I was doing something very important and meaningful. In my mind and heart, I dedicated the fundraiser to my much loved warrior princess friend.

So with a new vigor, I woke up the next morning (not that I really ever slept), and practiced and practiced and practiced my speech. I competed in speech in high school and as funny as it is to recall now, I in fact ranked 12th in the State of California in Original Oratory (i.e. persuasive speaking) my junior year and competed at the national championships in Fargo, North Dakota. So, even though it had been more than 20 years since I’d actually engaged in public speaking, the actual act of doing so didn’t really terrify me. It was everything else that terrified me. In addition, because of my vision issues which make it difficult for me to read especially in stressful situations, I committed my lengthy speech to memory. I knew I didn’t have it down cold, at least not cold in the way I used to memorize my speeches for competition and I wouldn’t be able to practice as much as I had in high school. That fact also made me nervous. The prospect of blanking in the middle of a speech is always daunting.

That night was a night I will cherish for all the days of my life.

With the funds raised as a result of the Cleary event, I have raised nearly $100,000 with another nearly $50,000 in pledged money. I share those figures because I want to be transparent. While Josh and I consider the evening to have been very successful from a fundraising perspective, I cherish the memories of that night not because of the money but because of the people who came to show me support. Notwithstanding my fears, people came, a lot of people, so many that at one point there wasn’t any room to sit or stand as people gathered at the back and sides of the room (as people are wont to do at these things). And the partnership turnout was unbelievable. I was told by one partner that there were more partners there than there typically are at a partner meeting. I’m sure there was some exaggeration in that statement, but I will take it nonetheless. The evening was made more special by the presence of my sister and parents (who happened to be in town), Josh and our daughters. Even though my parents didn’t understand a word of what was going on, I could tell they were proud in their understated way. They were also tickled by the many people who came up to them to say hello and tell them how they’d seen pictures of my parents on this blog – small scale notoriety for my parents. The girls loved all the attention (and toys) they received. Mia warmed every heart in the room when she ran to help – or at least she thought she was helping — me down the makeshift stairs as I awkwardly left the podium; my vision makes me terrible at going down stairs and my almost-five year old recognizes her mother’s obvious deficiencies. While I could sit there and critique the delivery of my speech from many angles, even highly self-critical me would have to agree that the speech was a huge success. Afterwards, the most senior partner at the firm told me it was the best speech he had ever heard in his life. Again, I’m sure there was some exaggeration in that statement too, but that is still a pretty special compliment, especially coming from him. I certainly never received that kind of praise for my legal work, I assure you. Thank goodness for those years of high school speech and debate!

As I wrote in A Love Story, cancer has given me the opportunity to experience a love that I never knew was possible, that I believe many go their entire lives without experiencing. It is an ephemeral love that comes and goes with the urgency of the situation and the changing of the seasons.  When it is dormant, I am plagued by the conviction that everyone has forgotten me as they go on with their lives. And then, an unexpected evening like the Cleary fundraiser happens where colleagues and bosses with whom I once worked late into the night show up to tell me they care, that they’re reading and that they think what I’m doing is commendable. And I am absolutely amazed that even though we may not have shared a single personal detail about ourselves during those many hours together (always intent on preserving the professional boundaries were we), they actually really cared enough about me to come. For the last two weeks, I have basked in that love and support from that night, trying to hold onto it for as long as possible for I know the love will go away as it always does, trying to trap it in my heart so that the next time I feel forgotten and lonely, I can retrieve it.

I realized that night that in order to feel that most exquisite and singular love, which I felt then and at UCLA, one must be willing to take the risks, to be exposed, to be open and vulnerable, to be courageous. Yes, being so public comes with some significant downside, some real pain, disappointment and loneliness. It isn’t the safe and easy thing to do. It’s hard and frightening and nerve-racking. But as is often the case, that which is potentially painful, hard, frightening and nerve-racking yields the greatest reward. I once wrote that a life worth living is one filled with courage. It’s perhaps the truest statement I’ve ever written.

[Considering the length of this post, I will share a link to the video recording of the presentations from that night as well as I copy of my speech in the next post.]

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7 Comments (+add yours?)

  1. Debbie whitmore
    Sep 23, 2014 @ 21:00:48

    I feel so honored and lucky to be your friend Julie. I don’t know what to say, you wrote such nice things. I’m truly touched. You are our communities warrior and survivor. Your spirit is amazing and a gift to all who know you! I love you my special friend:)

    Reply

  2. Katie
    Sep 23, 2014 @ 21:55:49

    I’m here with you and for you, and I am in awe of your energy and determination. Even though my crisis has passed, and I am supposed to be cancer free (my paranoia won’t let me believe it) I can barely get through the day, let alone think about raising funds or blogging. Please keep up the fight for those of us who are too weak.

    Reply

  3. Paul
    Sep 24, 2014 @ 07:51:58

    Great stuff. Life filled with courage = life without fear

    Reply

  4. Kit Grady
    Sep 24, 2014 @ 21:04:26

    your words are always so beautiful and powerful

    Reply

  5. The Astonishing FartMan
    Sep 29, 2014 @ 23:06:29

    Hey Julie, I’m still out here, reading what you’re writing, but so covered with work that I haven’t time to write a decent comment.

    Somewhat apropos: One of my favorite remarks is when people (bored with my cancer saga) tell me, “You really dodged a bullet.” They seem to be thinking that I got cancer, I got over cancer, and now I should please never mention it again.

    I want to reply to them, “No, I didn’t dodge that bullet. That bullet hit me and took out a nice chunk of flesh, and I will never be the same. My body is completely screwed up, never to be the same. And my brain/mind/spirit (whatever you want to call it) was also affected in ways that aren’t all good. In many ways, I will never ‘get over’ cancer.”

    When someone is telling me some everyday complaint, sometimes I (half) jokingly say, “Sorry, I’m too busy feeling sorry for myself to feel sorry for anyone else.” Cancer has taught me (as if one should need teaching) that we all are limited creatures. We are human, not divine, so our capacity for compassion is not infinite. Neither is our patience. Neither is our capacity to function cheerily without sleep.

    Somewhere, once or twice, I wrote (less than half) jokingly that the common quality essential to every serious chronic illness is . . . boredom.

    Eventually, everyone–doctors, friends, family, spouse, even the patient himself–becomes bored with the illness, if not also with patient. One is generally expected to get better or to die, because (for those who deal with illness and an ill person every day) it is impossible long to preserve the novelty that helps make the ill person an interesting rather than a bothersome thing.

    We who are ill must accept this fact and make the best of it–by especially appreciating all the scattered little favors and helps people do for us, and most especially by thanking God for those very few people who stick by us day after day after day of frustration, pain, sadness, fear, anger, etc. even when we are unpleasant to be around, even when they are truly and justly bored with us and our illness.

    My feelings about such things have certainly changed since I got got sick. But my feelings aren’t jaded or cynical, although it might sound that way to someone who hasn’t been through the cancer mill. I love life and humanity now more than I ever did before. Before, I romanticized both myself and my fellow human beings. Now, I think I see myself and them for who we are and love us for who we are.

    (BTW: I had been working on a long and brilliant comment to something you wrote about three posts ago–some comment about how I do so hope and believe that there must be at least some little piece of each of our existences that can make its way beyond our physical demise, that I must believe that possibility, not because I am selfish about my own immortality, but in order for existence to have any meaning. Hmmm?)

    Reply

    • julielyyip
      Sep 29, 2014 @ 23:14:01

      Astonishing Fartman! I’ve wondered what happened to you for I have so missed your comments! I’m glad your absence has merely because you have been busy rather than because you having forgotten me or because I offended you or because something horrible happened to you. We worry about the latter, those of us who live with cancer. Insightful, thoughtful words as usual. And much appreciated!

      Reply

  6. The Astonishing FartMan
    Sep 30, 2014 @ 00:26:25

    You are kind to worry about me, but you shouldn’t ever worry about offending me. I deserve to be offended every now and then.

    It’s not just work keeping me busy, but also family obligations, too. My dear father is in poor health and now is “losing (some of) his marbles” and needs a lot of help. My sister has taken on most of the duties, but I try to step in to give her a break, so I’ve been back and forth from Houston (where I live) to Austin (where my sis lives and where my dad now lives) about ten times in the last four months to “daddysit.” In July, I took dad back to his “home” in North Carolina for a week to see his relatives.

    It was chaos.

    It makes me feel really good to be able to take care of my father instead of just being taken care of by other people. I bet you feel that way about looking after your girls and your husband. But, boy oh boy, dad is a lot of work (demanding and grumpy oftentimes), and I just don’t have the stamina I used to have, so he wears me out. Still, I do feel truly blessed to be able to help care for my father. Of course, I wish he weren’t sick and didn’t need help, but am so grateful to be able to help care for him (even though he often complains about the things I do for him). I think I remember someone has said that the deepest gratitude is not the gratitude we feel about the things others do for us but the gratitude we should feel about being able to do things for others. I guess that sort of relates to what you want to do with your fundraising.

    Reply

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