Write to Privacy

October 5, 2007 at 4:30 pm (Uncategorized)

Last week a friend told me that she found my recent blog entries to be more personal and more revealing than previous ones.  And while at my brother’s wedding, a relative asked me why I found it necessary to divulge so many private details about my life for strangers and family alike to read.  His was a good question.

My friend is right.  My essays on the Chronic Town site have steered into new territory, and the sharp turn I’ve taken into topics such as prednisone-induced binge eating and my fervent (and so far thwarted) desire to have another biological child has been a calculated one.  It’s not easy to put these thoughts down and then cast them into cyber-space for all the world to read – or snicker at.  Posting “Thin Blue Lines”– my meditation on a negative pregnancy test – was uncomfortable.  Do I really want people ranging from my mother to my mother-in law and from friends down the street to perfect strangers in distant countries to have access to my heart and its longings?   Not really.  But then again, I do.

I come from an intensely private family.  This assessment is meant to be neither judgmental nor sinister, simply that we tried to solve our problems within our family before turning to the outside world.  Like other families, we have our own rituals for the holidays, our own code for speaking to one another.   I mention this only to indicate how counter-intuitive the public revelatory process of this blog is for me.  I often think it would be better to hide my sickness and the changes it has wrought in me from the world.  It would be safer and easier to keep my sarcoidosis contained within my body and within the familiar nexus of my family.

Privacy is an odd concept – and a particularly modern one.  After all, it’s a luxury to worry about privacy, when two hundred years ago we huddled twelve to a room and starved to death en masse.  But times have changed.   On the one hand, stringently maintaining privacy can keep you safe.  Who can steal your identity if you never divulge your social security number?  Who can discriminate against your sexual preferences if your sexual preferences remain unknown to everyone but your partner?  At the very least, vigilantly patrolling the boundaries of the self creates the illusion of safety.  To parrot the precept of post-modern über philosopher Michel Foucault, knowledge is power.  Once somebody knows you, they can regulate you, control you, try to own you.  It’s scary stuff.  But on the other hand, strident privacy can strangle you.  Who wants to live in utter privacy?  It is a joy to be known among friends and family and coworkers.  People can care more deeply and more genuinely about you when they understand you.

I didn’t think about these things when I launched Chronic Town.  All I knew when I started writing the first entry was that I was sick, that I was scared, and that, even with a loving husband, a cute baby boy, and a helpful and generous family to support me, I felt utterly and terribly alone.  I had a disease that no one had ever heard of – including me, when they first diagnosed me.  Worse, I had a form of a disease that didn’t conform to the optimistic projections I found on Web sites such as the Centers for Disease Control’s, which chirped about how most cases of sarcoidosis were mild and spontaneously remitted.  Whatever I had wasn’t mild, and it wasn’t spontaneously remitting.  Instead, I had doctors (highly qualified ones, with strings of letters and titles after their names) cautioning me about my mortality expectations.  I was 34 years old and had just been given what felt like a death sentence.  My husband and my parents were as traumatized as I was, so I felt like I couldn’t break down in front of them.  My son needed me to care for him, not sob in front of him about dying before he started school, when all he really wanted was a snuggle and a hit of breast milk.  My friends had no concept of what was happening.  Even keeping them informed of the latest medical news (“I have pulmonary hypertension!”  “No, wait! I don’t have pulmonary hypertension!”) was feeling like a full-time job, and an isolating one at that.  I’m a writer, so when I have something important to communicate, I turn to the written word.  I didn’t think through the meaning of Chronic Town; I simply felt compelled to write.

I’m not sure what my life would look like if I hadn’t started this blog.  Writing about living with a chronic illness has proved to be liberating.  Finding the words to express the daily frustrations of sickness and pain and the nagging, thrumming fear of death, have helped me come to terms with my new, post-diagnosis reality.  I’m not the same woman I was when I began writing these essays.  The disease, and all it has brought with it, have changed me – physically, emotionally, and spiritually.  I don’t necessarily like all these changes; sometimes I pray fervently in the dead hours of the night to return to my old, strong self, the woman who could hike twenty miles up a mountain.  But showing up on the page here has helped me show up for my life as a writer, a wife, a mother.  It takes a certain courage to say what is true, even if it makes me wince.  Just the process of truth-telling has made having a chronic illness easier, privacy concerns be damned.

But this blog has done more than give me the space to vent, to explain, to come to terms with my own flailing health.  Quite unexpectedly, it has opened a network of communication with fellow sarcoidosis sufferers and their families across the world.  A simple sentence of encouragement  from Paul or Nancy in response to a particularly sad blog entry (and day) gives me the strength to keep putting one foot in front of another.  These folks are also sick; they also have children; they are also scared shitless and witless.  If they can do it, so can I.

Maybe my confessional mode of writing bothers a few folks related to me.  Maybe they find it unseemly for me to air the dirty laundry of my illness for all the world to see.  Sickness is messy –  it’s the stuff of blood and guts – and, as a culture, we’ve been well trained to hide it away behind hospital walls and in nursing homes, to whisper its secrets to a trained caste of healers.  But it’s all this lurking behind walls and mumbling to the White Coats that makes it so terrible to become sick.  The alone-ness is worse than any symptom.  People write me and tell me that it helps them to read my ramblings.  I hope so.  Because it helps me to hear from you.

Perhaps I feel able to leave the neat hedgerows of propriety and privacy precisely because I’ve gotten sick.  As anyone who has spent more than fourteen minutes in a hospital will testify, the medical system will quickly cure you of any notion of privacy.  Doctors, nurses and aides touch your private body parts with less concern than our veterinarian examines our cat.  I’ve had to recite the intimate details of my physical self in front of roomfuls of strangers.  I’ve had needles and tubes in more places than you can imagine.  I’ve had my butt and my breasts fall out of too-small hospital gowns.  I’ve had doctors interrupt me, and then fault me for not communicating.  After all this, writing about my reproductive woes seems downright demure.

I know that eventually I’d like to convert this blog into a book.  I’m not sure how to do that (if there are any editors out there reading this, feel free to offer advice), but I remain convinced that my perspective has value.  Perhaps that’s why the casual remark of a relative I see so rarely has prompted such a flurry of introspection.  I don’t see my writing as a sordid unveiling of private details; I view my project as one that connects me with others (both healthy and ill), educates people about life with chronic illness, and breaks down the barriers of distance and fear that make it more likely for the chronically ill to feel alone and afraid.  Most of all, it keeps me from feeling quite so alone and afraid.   That’s worth a little violation of privacy, don’t you think?


  1. carol sherman said,

    Your writing is beautiful. What you disclose invites the reader into your interior space and reveals your emotions. I like it. There is no pretend or falseness….. Keep it up. It helps you and the reader

  2. Kendra said,

    (Emerging from the shadows here to tell you I’m still a faithful reader…)


    Your words and perspective are raw, beautiful, honest and still so compelling.

    And hey, you forgot one thing about what this blog is, from that last paragraph of yours…

    It’s your legacy.

    And no, I’m not being morbid. This will be your legacy when you’re a wrinkly old lady and you and old man Jay are talking: “Remember that crap-ass couple of years we had when I was a youngun in my 30s? What was it called, sarcoid-what-now?”

    Keep on keepin’ on.

    (I’d buy the book)

  3. Nancy said,

    Your voice has been there when my own was too pissy to speak – my rambling thoughts and fears got confirmation, something I desperately needed on certain days. Bravo for your voice – you are in my thoughts and prayers – Nan

  4. Alicia said,

    Thank you.

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