On Why I Write

Sharon at Bed, Body & Beyond is hosting the next Patients For a Moment blog carnival and asks us to consider why we write.

I’ve posted about writing often here, and how the questions of
public lives versus private lives and storytelling
get more complicated the longer we write.

But since it is such a fundamental part of my life, as well as a fundamental part of my experience as a patient, it’s a question worth exploring further.

First, there’s the obvious. I write because as an author, editor, and an academic who teaches writing, it is my job.

I started writing this blog because I knew there must be other people like me out there, young adults living with chronic illness, and I wanted to find them. I’d always been the sick kid, the sick teenager, the sick twenty-something, and while I knew I might never meet someone with my rare set of diseases in real life, I knew wasn’t alone. And I knew that whether we’d been sick our whole lives or were recently diagnosed, whether our illnesses were life-threatening or life-altering, our individual symptom differences paled in comparison to the universals we struggled with: acceptance, denial, balance, guilt, etc.

I keep writing this blog because as my own journey has evolved from being a single graduate student to becoming a married person, an author, and a mother, I continue to learn and be inspired by those I find on similar paths, facing similar challenges. Careers, infertility, chronic illness, parenthood, patient-hood—the perspectives I encounter on all of this from readers and from other blogs are often invaluable.

I wrote Life Disrupted for similar reasons: I wanted to capture the experience of living with chronic illness as young adults. I am writing my second book because I started asking lots of questions about the evolution of chronic illness in American society that I didn’t know the answers to, and I realized I had to keep digging. (Still digging, but getting close to the end!)

But more simply, I write because it is what I have always done, for as long as I have memories. I write to process, I write to clarify, I write to learn.

As a sick child, I wrote because it was something I could do no matter how bad I felt or how many nights I was in the hospital. I wrote because I loved to read, and books kept me both distracted from illness and connected to something beyond myself. I wrote because I couldn’t always run or play, and I wrote because the voice I discovered in writing gave me an identity beyond that of the sick one. It gave me self-esteem and confidence when my body betrayed me over and over. I don’t know that I’d have gone to Georgetown, or interned at Washingtonpost.com, or done a lot of the things being a teenage and college-aged writer allowed me to do had writing not already been such an integral part of my self-concept.

I have no doubt I’d still be a writer even I hadn’t spent my whole life as a patient. It’s the way I make sense of my world, it is my instinct at every turn. But I wouldn’t have needed writing the way I did so often through the years, and I don’t know that I would appreciate its ability to build community and connect people the way I do. Writing is an extricable part of my personal life, but I’m fortunate that having a career based on writing isn’t just good for my spirit. Writing allows me to have a successful professional life despite my health issues, and though I didn’t consciously set out on this path for those reasons all those years ago, I am grateful to be here.

Our Children, Our Stories

So, apparently July happened.

Seriously, how it is that July happened?

But it did, and here we are. And yes, I am still here, despite my unplanned hiatus. And no, there is no major calamity or crisis to report, just life being life and being all kinds of busy and stressful and wonderful and challenging.

At some point in the past couple weeks I read this essay on parenting and writing in the New York Times and between the footnotes, interviews, and word counts and the music classes, swim diapers, and clapping and waving, it stuck.

While a lot of the essay was about the author not wanting her son to hear a reading of her memoir detailing a more colorful time in her life, the part of the essay that resonated with me was the author’s acknowledgment that the people in our lives didn’t necessarily sign up for living with a writer or having their stories out there. That’s something I think about a lot as a nonfiction writer and as a blogger. In fact, I think the more I write, the more tightly I hold their stories against my chest. It is not an easy line to walk—providing enough detail and humanity so the reader is invested without betraying someone else’s privacy.

Naturally I am most cautious when it comes to my daughter. There are so many anecdotes and revelations I think about writing and then wonder if sometime down the road, she will be embarrassed or wish I had refrained, if the line between my story as her mother and her story as her own independent person should be thicker, not more diaphanous. So I write her letters each month and save them in a folder on my desktop, knowing someday I will print them and give them to her and hope I choose my timing well so she doesn’t cringe at the mushiness.

But there are moments that feel appropriate, tiny glimpses of a private life that are meant for public consumption. I can’t believe it has been four months since I wrote a morning snapshot of my sweet girl. I am not one to get too sentimental when one stage ends and another begins because each stage is so much fun and so amazing in its own right, but just like I can’t explain how I blinked and a whole month of the summer has gone by, I don’t know quite how it is that our house doesn’t look as much like a baby lives here anymore.

The bouncy chair she just adored has been stashed away since we were still wearing winter coats. The jumperoo she loved is down the basement because why jump when you can crawl or take teetering, tottering, sideways steps, or swing from one piece of furniture to another? I fear the beloved exersaucer, the scene of so many squeals and pulls and bops! is the next casualty, since the only thing she has used it for since May is something to pull up on and cruise around.

I finally got around to returning the hospital-grade pump, and broke down and cleared out all of the bottles, despite the fact she has used her sippy cup for months. My own little act of denial, I guess. The bottles and the boppy nursing pillow were what gave me pause, and really made me stop and get a little sentimental that she is now 10 months old since they represent such a physical connection to her babyhood. Just tonight as I was weeding through some of her newborn clothes to give to a new baby, a tiny purple Mary Jane sock tumbled out and my breath caught a little at how tiny she once was. (Though so far she has her Mama’s height and can still rock the 6-month clothes…)

It is too good to go this fast.

The baby gates and the sharing entrees with me and the fact that it took twice as long to get through chest PT because she was chasing down the dog, standing next to my therapist trying to pat me, and crawling on my head—all of this points to toddlerhood.

Every stage has been wonderful but even if I could, I would not go back—watching this little person emerge with every wave, every smile, every emphatic shake of her head and every triumphant declaration of “Up!” when she gets up is too good.

(Too good to go this fast.)

IRL: The Rare Disease Edition

So, last weekend I met and had brunch with a fellow PCD patient. (Hello, L, if you are reading this!)

That sentence is actually pretty monumental. You see, it is the first time I have ever met someone with PCD (and bronchiectasis) in person. And, for all I know, it could be the last.

(There was that one time a young PCDer happened upon a book reading I was doing for Life Disrupted totally by coincidence, but we were both a little under the weather and therefore could not come in contact with each other, so I saw him from afar but did not meet him.)

It is a reality of life with rare diseases that we can go years, decades, even lifetimes, without meeting other patients in person. When I was first correctly diagnosed, I can’t tell you how helpful it was to know other people like me existed, and to read their stories and advice online. The impact of the Internet on the patient experience in general and the rare disease patient in particular is so important and so layered I plan to tackle it on its own and in other venues.

As you know, I am staunch believer that our experiences as patients with chronic illness unite us more than our different symptoms and diagnoses, and I will always believe that. At the end of the day, dealing with acceptance, control, relationships, balance, work, families, etc are universal challenges.

However, there is something so different about seeing someone in person. To drink coffee and swap stories with someone whose experience so closely mirrors your own. (In our cases, collapsed lungs and pneumonia at birth; frequent and serious infections throughout childhood and on; multiple surgeries; multiple hospitalizations; incorrect labels and diagnoses; secondary conditions like bronchiectasis and infertility; etc, etc.)

Oh, and we could cough and it was no big deal, and no asked if we needed water or were sick because everyone at the table knew that cough was as natural to us as the inhaling and exhaling everyone else does that we can never take for granted.

I don’t want to say it was validating, because I have my correct diagnoses and treatments now and am past needing validation. I think comforting is the right word, because despite technology and blogs and social media and online forums and everything else, being a patient with a disease nobody recognizes and nobody around you has can be isolating.

How many of you have felt that way?

(And I’m not talking about the health care delivery implications of people not recognizing it; I’m speaking strictly of the social and emotional aspects of living with these conditions.)

A sense of community is harder to come by when it comes to rare diseases. There are no disease awareness months, trendy wristbands, walk-a-thons, etc. Thankfully we have the umbrella National Organization for Rare Disorders, and numerous disease-specific work tirelessly to advocate and research for new medications and treatments.

But day to day, in the shuffle of work and doctor appointments and daily chest PT, in the managing of all the other conditions that take second seat to how well can I breathe today, it does feel a bit lonely.

I’ve been thinking about community a lot these days, especially since my post on audience: the power of communities to abandon differences and unite to effect change (the disability right’s movement, for example); the power of disease-specific communities to achieve tangible results (the early HIV/AIDS movement, for example); the power social media has to create and sustain communities and disseminate knowledge (for the better and the worse.) Looking at current events in the world right now, clearly this discussion is not limited to patient communities.

Though I’ve struggled with assimilating my writing and blogging with the new communities I find myself (parenthood, working mother, mother of a patient, etc) I am getting there. And while I have a lot more to write about the points I mentioned above, on a personal level, I am trying harder to connect to the communities I dohave.

An avid reader, I’ve been terrible about commenting on blogs the past few months, and can do a lot more here, too. I’ve also updated a sorely out of date patient/medical blog roll, and added a whole new category of parenting, infertility, and adoption blogs that I read. For either category, shoot me an e-mail if I’ve missed you and shouldn’t have!

Are You a Health Activist?

Last week, I had the chance to attend WEGO Health’s first Health Activist Meet-Up here in Boston. It was my true public excursion in weeks due to infections and related pregnancy issues, and I am so glad I was able to go.

The WEGO folks are infectiously enthusiastic about health care and social media, and from the “pick three hashtags to describe yourself” to the lively chitchat before and after the breakout sessions, the vibe was friendly and dynamic. I had the chance to catch up with friends like Cheryl Alkon of Managing the Sweetness Within and meet several new bloggers and Health Activists, like Karen of Bitter-Sweet.

I was pleased to have the opportunity to lead one of the three sessions, one called “The Road to Activism: How to Turn Your Passion into Activism.” As I prepared for the event, I thought about what it was I was passionate about and what it takes for anyone to turn passion for an idea or a cause into activism.

I used the following steps as initial talking points:

1. Identifying Your Passion
2. Recognizing Your Strengths/Becoming an Expert
3. Finding Your Voice
4. Locating Your Niche/Building Your Community

Luckily, I had a dream group of articulate, interesting people and from those brief talking points, a true conversation emerged. Of the many take-away points we covered, one that stands out to me is the idea that everyone becomes a blogger, author, advocate, etc (in sum, a Health Activist) for different reasons and wants different things from the community in which they join. For example, the newly diagnosed might want validation or commiseration, while “veterans” might be more interested in sharing experiences or offering wisdom from experiences. Successfully turning passion into activism depends partly on knowing what you offer, what you want out of the experience, and connecting with like-minded people.

In my case, I’ve always been passionate about writing and after an entire lifetime of illness and hospitals, I realized maybe I could use that passion to share experiences and lessons learned. My passion is chronic illness in younger adults, because so many of us live with it and face challenges unique to this stage in life. As I joked the night of the event, I am equal-opportunity when it comes to chronic illness—I don’t focus on any one condition or disease, partly because I have several conditions, because I am a rare disease patient, and mainly because I believe the universal challenges of life with illness unite us.

But that’s not what works for everyone, and that’s why I think the whole idea of turning passion into activism is so interesting—there are so many outlets and ways to express ideas and build communities. I think the robust diabetes online community is a great example of how successful a community of people contributing perspectives on life with a particular condition can be.

What’s your reason?

Other compelling questions we discussed that evening were deceptive in their simplicity:

What do we mean by activism? When do you become an activist?

Some of us were of the opinion that it can happen when you don’t even realize that’s what is actually happening. It could be the first time you write a blog post, the first time you get a reader comment that really stays with you, the first time you put yourself out there.

But I’m interested in what you have to say-what do you think when you hear the word “activist?” When does that transformation from merely being passionate to becoming an activist occur?

Thanks again to WEGO Health for a great evening that set the stage for relevant and inspiring conversations. Looking forward to the next meet-up!