Can of Worms

Canofworms1The first thing I wrote after learning, on December 30, 2002, that my unborn baby faced a high likelihood of death at birth was an email to work, explaining why I wasn’t coming in the next day.  Over the coming months I wrote several emails to family and friends, some of them from a room in the Ronald McDonald House behind Children’s Hospital Los Angeles, some of them from the parent’s room at Denver Children’s Hospital, but all of them from that sweet-spot between hope and despair, where one is capable of forming coherent thought without melting into a pool of pain.

When my child was 19 months old I found CarePages.coom while at the hospital for the fifth of what would become twelve different heart surgeries of assorted risk and recovery.  The CarePage was a Godsend that allowed me to communicate to everyone who wanted to know what was happening without the pressure or fear of leaving someone off the list. I could also control the access and be as raw, honest, and optimistic or pessimistic as I felt. It sustained me through surgery number 12.

An odd thing happened along the way, a coworker (I don’t know for sure which one but I have my suspicions) complained to my manager that my solicitations for research funding was making him/her uncomfortable.  I was taken aback because I know my company’s policies, and I never once asked for donations using any company resources or on company property or company time. I defended myself accordingly as this person would have seen my request only on my personal blog that required an account creation and active log-in to view.  This was my first taste of criticism or judgement levied against how I communicated our family’s healthcare and emotional experiences.  I’m sure there were others critiques. It is simple human nature to judge others, even when we aspire to be better than that.

It’s been eleven years and several days since I sent that first email. Now I’ve written hundreds of blog posts, not just here but as a guest blogger in various venues. I wrote an article for the American Academy of Pediatrics. I spoke in front of 10,000 people and participated in several media appearances. Television cameras have been in my house to film our family, and I had the surreal experience of being interviewed by the radio reporter who I was listening to on September 11, 2001. I’ve spoken at symposiums and panels from Los Angeles to Atlanta, and then there’s that book I wrote. One of my blog posts had over 15,000 hits in less than 24 hours once, but I don’t want to talk about that because it was controversial and controversy makes me queasy. When confronted with hard questions, most of us get queasy. Suffice it to say, I’ve been heard.

Along the way I was sustained not by what I wrote publicly but by what I read and wrote privately, to mother after mother after mother expecting a child like mine or seeing one through yet another (thousands now from my social network) of heart surgeries, or seeing their children to the end of life (fewer but far too many of those in my social network). It was in those private chat rooms and emails that I found my calling to share beyond the locked-up blog. I shared because those mothers needed me to, because when we all went to Barnes & Noble for first decade of my son’s life, there were no books for us, by us. There weren’t even books about us by others. We were silent and invisible and our children were reduced to anatomical anomalies and relegated to $800 text books and libraries to which we were not admitted.

These mothers’ and fathers’ need was my need and my mandate. I spoke and wrote to validate our broken hearts because when a child is born with a broken heart his mother’s heart breaks too. It just does.  Then there were the grandparents, siblings, cousins, best friends, and assorted supporters not just in my life, but in the lives of my heart-mom friends. They appreciated what I was sharing and were gracious enough to let me speak for many of them.  My willingness to share in a public way helped us unite, brought awareness to a prolific but invisible disease, and raised funds to save lives through medical research. It was a beautiful thing; until it wasn’t.

This past week a married couple of professional journalists did something really tactless, maybe even vulgar.  They questioned the taste and validity of a cancer survivor’s blog and tweets about her struggles. This woman Lisa Bonchek Adams happens to be someone whose blog I’ve followed for about a year. She is a graceful writer and a fierce advocate for herself and others. Here are the articles and some of the fall out for your perusal:

Emma Keller’s Article (the title will offend you so you can be surprised by it).

Bill Keller’s Article, less offensive but just as dense

Fall Out. . . More Fall Out . . . Even more fall out . . . Yet MORE fall out

I’m not going to comment on the Keller articles. I’ll just let them put their own feet in their mouths and leave it to the fall out boys and girls to take them to task. I can’t either Keller seriously as a social critic because they clearly don’t understand how the Internet and social media has allowed millions of patients and caregivers to break free of choking isolation. This is something I’ve not only lived for eleven years but studied in graduate school. Healing and re-framing through narrative and medical blogging belongs to an academic body of knowledge and has received extensive quantitative scientific analysis. The Kellers seem woefully uninformed about this topic yet felt themselves competent to critique its implementation. They missed the point.

The finer point, which they both trampled over in their haste to champion their clumsy opinions, is, “Why do we share what we share, and what are the unintended consequences of our pursuit of the truth or other noble or less noble motivations?” This is a valid question that doesn’t necessarily invalidate the sharing itself. I give Lisa a full and free pass on whatever she writes because she is writing about her body, her illness, her fight. It’s all hers and I defend her fully on her right to say whatever the hell she wants about it on social media accounts that belong to her, and to which people must actively visit and subscribe . . . unlike say two of the biggest newspapers in the world that an enormous amount of the global population will read in passing. Lisa Bonchek Adams need answer only to herself.

The finer point has also led me to examine the unintended consequences of my own writing. I’ve been aware of these unintended consequences for some time, but I had my come-to-Jesus moment about them this week in light of the more subtle question never deftly stated in all the chaos.  What were the unintended consequences, and do they outweigh the motivation and the intended result?

Exhibit A: This Twitter post by the Executive Director of Association of Public Health Laboratories referencing my comment on a panel in front of a ballroom full of PhDs at an international convention in Atlanta:
Scott Becker @scottjbecker 7 May
“I have come to accept that I will likely outlive my child” @amandaroseadams at #nbsgts13 [TY for sharing your story]

(As an aside, Scott Becker is a lovely and wonderful person and had every right in his professional capacity to tweet this from a public forum where I was an invited speaker. I had no expectation of privacy, but weeks later I was stunned to read my own quote and see how powerful my words were looking back at me, even or especially because they tell my truth).

Exhibit B: My son (then 9) sitting on my chair in my home office reading the first chapter of my book and asking me if his hospital roommate described in that narrative died (he did). Then I had to explain that he needs to wait until he’s older to read the book that is about him. We live in a paradox where this child not being old enough to read about his own infancy.

I have many other exhibits as, for good or for bad, I’ve been an exhibitionist.  I have been such a fierce and feisty champion of the truth that, for too long, I was entirely blind to unintended consequences. Since KellerGate I deleted the most vulnerable photos of my son from the Internet, not because I’m ashamed of his pictures, but because they are his pictures. When we took those pictures, we feared (and with good reason) that they would be his last.  That was then, now this is just a fraction of his significant and much different life. He starts middle school this fall, but I have already established a huge online footprint for him when his peers are just beginning to define their own.

So, this moment has become a crisis of faith and a crucible of contrition.  KJ Dell’Antonia is also with the NY Times online, and and she wrote this post today. We’ve been discussing this issue for a few days and her take on it expresses, from a slightly different but still relevant angle, how I feel about the unintended, if not yet fully manifested, consequences of telling my child’s story for him.  Which brings me to this can of worms, or maybe a better analogy is the empty bottle. The genie left long ago, and I can’t get it back in the bottle.

I can clean up, delete, and lock down things that I’ve written and reduce his online footprint a little.  I can start fresh and stop writing about my son entirely, now that he’s older and will be trying to make all new friends in the fall. Or, I can set a rubric that I will not say anything about him I would not say in front of him, not just when he’s 21, but when he’s almost eleven.

This brings me full circle back to why I ever wrote anything in the first place . . . those private messages from all the moms who you will never hear, who are stressed out, terrified, and silently fearing the worst. The worst will find some of them whether I tell you or not.  I have also received messages from grown ups who were once just like my son – miracle babies who weren’t supposed to get as far as they’ve gone, and many of them appreciate this perspective. Some adult readers born like my son have told me my book helped them feel closer and more empathetic to their own parents.

A boy, a high school senior, who bunked with my son at heart camp read my book three times because it gave him some insights into his own story.  When I think of that, I feel so conflicted. Did I help one boy at the expense of my boy.  Or am I presuming some imagined harm or discomfort on behalf of my son that he may never feel.  He is, in fact, a very open advocate for his condition and not at all embarrassed or shamed by it. I’m proud of his resilience, but I wonder if he’s acting on his own nature or responding to my nurturing. I’m wondering about a great many things these days.

I know my motivation and output has merit. I know there is intrinsic value in what I’ve done. Yet, gone is my self-righteousness, and an ever-growing uncertainty and ambivalence is rising with the dawn my son’s adolescence. I don’t have the answers, but I have the courage to ask the hard questions, and ask them first to myself.

2 Comments »

  1. Amanda, the online and print legacy you’ve created for Liam is mostly motivational and inspirational. Don’t worry, he will create his own online persona in due time. Your own processing and social interaction both online and otherwise have made you a better parent, partly because you needed an outlet and partly because it’s linked you to a very large network of support. I don’t think you need to keep second-guessing yourself.

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