I’m Not Crazy

Thanks to everyone for the positive feedback on this blog thus far.

I know there are those of you out there who, while you might think this blog is a great idea, could never imagine yourself so publicly talking about a serious medical condition and the baggage that comes with it.  I know there are others of you — like my mother — who think I’m crazy (although you would never say so) and that the blog is just a terrible idea.  If I wanted to create a record for my children or vent, keep a journal, my mother would say.  Illness is a very private and personal matter that one shouldn’t even share with family members, she would insist.  I say “would” because I haven’t actually talked to her about this blog, other than to say, “FYI, I started one to keep people updated about what’s going” (so don’t be surprised if your nieces and nephews and total strangers know about what’s going on with your daughter).  Her response was, “Well, don’t tell people anything private.”  Ugh…whatever Mom.  I shut down the conversation before she could say the things I knew she waned to say.

My mother doesn’t read English so there’s no worry that she will ever read this posting.  But out of a desire to respect her need for privacy, I will not talk about how she dealt with the news of my diagnosis.  Suffice it to say that she broke the news to absolutely no one on her side of the family, not her mother and not her siblings — I did it.  I was astounded.  After all, this was just about sharing with close immediate family, not announcing the news to the world.

While I think there is a strong cultural explanation rooted in the desire to not “lose face” for my mother’s desire for secrecy, I don’t think it’s unique to Asian culture.  I know it’s certainly part of the Southern culture in which my husband was raised.  My father-in-law, with whom I spoke about this very issue not long ago, agreed that it’s a Southern thing, but that it can also be especially true with men who feel the need to preserve a sense of strength.  And of course, those who are introverts would find the kind of disclosure I’ve made and will make in future unappealing.  Whether cultural or gender- or personality-specific, I believe the desire to hide stems from a fundamental fear of the expected judgment from others and a distrust of human nature.

So then why did I create this blog if I could have just kept a journal or assigned the task of keeping friends and family updated to someone else?

Because for me to hide is to let the cancer win.  Because for me, to share with candor with all of you is a necessary part of the war that I am waging.

Early on after the diagnosis, Josh and I made an unconscious decision to always be forthright with our friends and family.  We never referred to the cancer as the “C-Word”.  I remember saying to my father-in-law, “It’s cancer.  Let’s call it what it is.  Let’s not beat around the bush.”  Papa Williams (that’s what I call my father-in-law)) laughed, and said, “Ya know Julie.  You’re blunt.  That’s just how you roll.”  Those of you who know me certainly know how true that is.

I have found that for me — and I emphasize for me because everyone has his or her own coping mechanisms — to hide a bad thing (whether it be an illness or any other struggle) gives that bad thing power.  By way of a popular cultural analogy, think Harry Potter and his refusal to call his nemesis by any name other than Lord Voldemort.

Seriously though, even before cancer attacked me, I had a lot of experience with hiding and disclosing.  Growing up with a visual disability forced me to confront on a daily basis whether I should pretend like I could see (to make myself seem normal and whole) or ask for help.  Hmmm, should I tell the teacher I can’t see what he wrote on the chalkboard and ask the total stranger where the gate for my flight is or should I just not have a freaking clue what’s going on and miss my flight?  Believe it or not, it was often times a very hard choice to make.  But the more I made the choice to ask for help and admit to my teachers, peers and total strangers my supposed weakness, the more I learned that most people aren’t going to judge me or think me weak, that people in fact were kind and wanted to help.  And if they were judgmental, then screw them — the important thing was that I aced the exam and made my flight.  So when I asked for help, I won and my visual disability lost.  When I hid my disability in shame, “it” became powerful and controlled my destiny.

Sadly, cancer cannot be conquered so easily through my individual choices.  It is a much more insidious enemy.  Nonetheless, the same principles apply.

Maybe I have too much faith in you all to believe that you will not think poorly of me.  That’s what my mother would say.  She would call me a naive optimist.  But my experience with my visual disability and now cancer has shown me that my mother and those who share her mindset are wrong.

While my naivete may be up for debate, I’m not crazy.  I just want to win my war against cancer. And if that means blabbing my personal business to the whole world, so be it.  May the cancer never again have the kind of power it had over me in the early days of my diagnosis as it paralyzed me and those I love with fear and hopelessness.  May it become impotent and die a little more with each new word I write here about the bad and the good.  Thank you, as always, for reading (and listening) and for being a part of my army.  Battle on!

[Side Note:  For those of you who don’t know about my visual disability, it’s a long story that could be the subject of another blog by itself given its profound effect on me.  Long story short — I was born in Communist Vietnam with cataracts, which meant I couldn’t see for the first four years of life.  I got surgery once I arrived in the United States (after a treacherous sea voyage) but enough damage had been done to my eyes at that point to make me legally blind.  I can’t drive.  Don’t even mention playing tennis.]

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12 Comments (+add yours?)

  1. Jared Causey
    Aug 21, 2013 @ 21:14:39

    Some powerful truths in there, Julie. Many things in our lives only have power because we relinquished it.

    Reply

  2. Faith
    Aug 21, 2013 @ 22:04:28

    Julie, this is just beautiful. Blogs ARE kind of weird (speaking as one who blogs!), but whatever; I’m glad you’re doing this & I’m signing up for your army.

    Reply

  3. Sam
    Aug 21, 2013 @ 22:16:05

    Julie,
    I know we have drifted apart in recent years: having kids (first mine and then yours) tends to do that to people. But I must say that I have always held you in the highest regard. Your grace and perseverance and, yes, bluntness, in the face of difficult personal circumstances has consistently awed me over the years. I’m sure all of those qualities, and the love of your husband and children, will see you through this most recent challenge.
    Much love,
    Sam Crane

    Reply

  4. Veronica
    Aug 22, 2013 @ 00:35:01

    Rock on sister! You’ve never been quiet, you’ve never been shy. You say what’s on your mind. You are who you are. That’s why we love you.

    Reply

  5. Dana Tipton
    Aug 22, 2013 @ 06:59:08

    You’re a beautifully strong warrior. Many years ago, you inspired me. Eventhough our meeting was brief, it has been one I cherish. You are in my prayers!!!!

    Reply

  6. Victor
    Aug 22, 2013 @ 20:22:36

    I can’t speak for the Southern culture, but I’ve had the same experience in the Chinese culture of “saving face” (or perhaps having a “stiff upper lip” or holding your head up high etc). I think asking for help is a sign of weakness in the culture. And giving elders bad news is frowned upon. I’ve had several extended family members deal with cancer and with other serious medical issues, and I’ve always been baffled as to why one would want to keep such important news from loved ones or from those that could help. In one instance, my grandmother was not informed of a granddaughter’s diagnosis with cancer nor of her subsequent passing, and it just deprived those that loved her the chance initially to share in the experience/journey, and later to mourn the loss. But on the American side of things, this granddaughter’s family was very public about the whole affair and was able to sponsor a number of fundraisers to help with her medical care, which certainly helped prolong her life and made her last few years fuller. So I’m certainly for your approach Julie! We want to join your army, fight with you, and share in the journey. And as you wage war, please let us know how we can help!

    Reply

  7. Irene
    Aug 22, 2013 @ 20:31:57

    Julie, I wholeheartedly thank you for giving us the ability to connect with you and your journey through this blog. I agree that much of fear lies in the unknown. By sharing the truth of your experience, you not only empower yourself, but the rest of us with knowledge and understanding. Reading about your experience actually gives me hope and comfort, even though we are so many miles apart. Thank you for this gift!

    Reply

  8. Anne Rose
    Aug 22, 2013 @ 20:38:30

    Dear Julie,

    What a privilege to read about your cancer journey. I feel blessed that you share the same views to talk and tell everyone. My mom is the same! I am a good friend of Denton; he is amazing like you are. You will be in my families prayers. Keep writing, your daughters are so lucky to have an enlightened mother.
    Hugs- Anne Rose

    Reply

  9. Anne Marie
    Aug 26, 2013 @ 18:37:14

    Julie – I’ve been away so am just reading your earlier blog entries now. I just wanted to say how much this post is YOU, in all your glorious (not crazy) self. It reminded me of our conversations in college – I could even hear your voice in my head from so long ago – and of your strength of conviction and consistent willingness to put it all out there, directly and honestly. It takes bravery to do so, but as you well know and have described, the benefits are huge. I once asked my dad if he thought religious faith truly helped his surgical patients come through difficult diagnoses and procedures. He said he wasn’t sure, but that there was no doubt in his mind that those with someone to hold their hand or sit by their bed always did better. Be it on a blog or in direct touch/conversation/letters/emails, etc., communication is powerful, rallying all of your community around you to envelop you in love and strength. I’ll be following your future entries, and sending you positive and loving energy from afar as you armor up and battle on.

    Reply

  10. Alice
    Oct 14, 2013 @ 11:16:58

    Oh hooray! Someone else who handles their cancer the same way I do and have done (third time breast cancer for me in 17 years). You can add the Scandihoovians found in MN (especially in Lake Woebegon) to those who are likely to keep quiet. A friend’s post on my facebook page is almost identical to Veronica’s post to you. One of my high school friends has authored “Cancer Bitch”, and there is also the book “Not Now, I’m having a NO hair day,” both of which have a similar take on opening up. So best wishes for keeping on keeping on!

    Reply

  11. Norma Lopez
    Feb 16, 2017 @ 18:19:35

    A few others have already said silence is true in their community, so I’ll add mine to that list. I stumbled upon your story via the Eph alum page. I’m class of 95 and remember you but as with so many friends and acquaintances from that time period can’t recall when or how our paths crossed. Anyway, I still struggle with breaking the silence but I’m working on it. Thank you for so openly and honestly sharing your story. I couldn’t agree more about the power of talking about cancer. 9 years ago, my mother passed away after an almost 10 year long battle with breast cancer. She was 54 and it was thanksgiving weekend and I would be turning 34 the following week and I was pregnant with my daughter. She was my biggest fan and most severe critic (the way only a Mexican mom can be, or so I think but I’m sure I’m wrong) and I miss her everyday. A couple of months later my daughter was born and my sister told me my our dad had pretty advanced colon cancer. He had decided not to pursue treatment because he needed quite a bit of his colon removed. Long story short, he was “convinced” to do the surgery and radiation and is doing ok these days. In recent conversations with cousins, I discovered that none of them knew about my dad’s cancer. He had chosen silence. I dont fully understand his discomfort with it but have tried to be respectful. At the same time I recognize the very real harm this presents to his family in not knowing. I’ve decided to share this information by sharing how many/often colonoscopies I (or my sisters) have had. In doing so I’ve discovered a cousin younger than myself has been having polyps removed, also in silence. I’ve angrily joked that I would like to poll my family about this. This silence is putting people, family members, at risk and it is giving cancer all the power! Ok, that’s it. That’s my angry, I hate cancer rant. And I hope I can ignore the voice in my head saying this is too private to share. And push post. Other than that, I wish you many more trials that work and give you and your family some hope. I pray for a cure for you and so many others who discuss death with loved ones in ways that feel like all the love in the world has been pressed into one moment but is also accompanied by so much pain. All my best, Norma

    Reply

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