Making Order Out of Chaos

When I read Duncan Cross’s prompt for the latest edition of the Patients For A Moments blog carnival, which asks how we recharge, I was sitting in my home office. Stacks of bills and paperwork that needed to be filed took up most of the desk space. An assortment of mail, cards, and other mementos took up residence on top of the filing cabinet, patiently waiting to be stored more permanently. Folders filled with journal articles and research piled up in leaning towers on the floor, competing with books I need to read and review, files to read through for my teaching and research projects, and various stickers and drawings from my trusty little assistant.

In short, my home office reflected the state of my life the past several months—exciting and productive but incredibly intense and long, too. (Teaching an overload (4 courses), managing the pre-launch book tour and subsequent book tour, doing in-person book events and interviews, freelancing, helping out with care before and after my father’s transplant, etc.)

Having all these very big things happen all at once equals a lot of emotion, a lot of responsibilities, and very little sleep. My husband works weekends, too, and with some juggling the two of us we kept up with the basics: laundry, weekly cleaning (dusting/vacuuming/scrubbing), cooking, etc.

But the long-term stuff? The filing, the organizing of pantry and shelves, the sorting through drawers, the de-cluttering and boxing up of old toys and games? All that stuff slipped to the wayside. We were just trying to keep up with the everyday stuff; filing paperwork was just not a priority.

This all goes back to the central question Duncan Cross asks—what do we do to recharge when we are run down? After reading it, I ignored the looming deadlines, closed down my laptop, and spent some time organizing my office. The desktop was pristine. Each scrap of paper had its rightful folder. Each stack of folders had its rightful drawer. I felt a little less burnt out and frazzled.

For a moment, I debated sitting back down and tackling the deadlines, but something in me just couldn’t. I’d done that at the expense of so much for so long.

So then came clearing out all our drawers and closets, then the intense dusting behind and underneath the furniture, and I felt even less burnt out and frazzled. Then came the whole downstairs, too. A couple hours later, I flopped down on the couch, wheezy and exhausted, but it was the first time in so long I felt settled. Even though I was incredibly sleep deprived and getting over a sinus infection, I felt so energized.

While the examples are not always so extreme and time-consuming, I realized after the fact that putting my life into order in the midst of chaos is something that always makes me feel a little better. Even something as small as writing out a To Do list has the power to both calm and recharge me when I am a hospital patient and I am physically unable to make order out of the chaos.

After a 14-hour stint at the hospital the day of my father’s transplant, my husband made sure the house was clean and organized before I got home, because he knew it would make me feel better to have things orderly when I was in such an emotional state.

My office is now a sunny, neat place to get work done, instead of a omnipresent reminder of how frenzied the past few months have been, and putting more order back into the household makes me feel like I have more control over my life in general.

How do you recharge? What do you do when life and stress and illness start to spiral?

On Holiday Wishes

Another edition of the ChronicBabe blog carnival will be out soon, and it’s about holiday wishes when you live with chronic illness. Jenni Prokpy asks, “What are you asking Santa for? What do you wish for the people who care for you? What wishes have already been fulfilled this holiday season?”

Where to start?

In so many ways, I have everything I need and want: I will wake up on Christmas morning with a happy, healthy toddler who greets every day with joy.

But that doesn’t make for much of a blog post, does it?

For people struggling with infertility, which is even more difficult and heartbreaking this time of year, I wish for them a path to building the family they dream of that is as smooth and expedient as possible.

For the babies and families spending the holidays in the NICU, I wish for them that they surpass all the odds they face and are soon able go home, and that they have compassionate caregivers and supportive friends and family until that happens.

For people living with chronic pain, I wish for them relief, physically and emotionally, and substantive distractions if relief is not possible.

For patients living with chronic illness, I wish for them a sense of acceptance that does not mean resignation, and a sense of balance that tends to their bodies and still nourishes their minds.

For the people who love, care for, and often live with people with chronic illness, I wish for them that they truly know how appreciative we are of their efforts, and that they give themselves permission to take a break.

For parents caring of sick children in particular, I wish for them the grit to advocate, the strength to defer when necessary, and (some) solace in knowing that what might hurt right now often helps their children long-term.

For the doctors and researchers working on rare diseases, mine and so many others, I wish for them continued ingenuity, persistence, and necessary funding.

And for my daughter, among so many hopes and wishes, I wish for her that she experiences as much joy from life as she brings into it.

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, 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.

On Inspiration

Aviva at Sick Momma is hosting the next edition of Patients For a Moment. In her prompt, she asks,

“So what do you do to get yourself out of the doldrums when you fall into a funk? What (or who) inspires you and gives you hope? Where have you found inspiration when you weren’t even looking for it? How do you keep on keeping on when your pain is high and your fatigue is even higher?”

When I try to think of the big picture concepts here, I get a little bogged down. There are so many things I could say, and I end up staring at a blank screen, precious moments of time slipping away. More just write, already and less perseverating, shall we?

Honestly, I’m just not in the right zone to write specifically about illness right now. I’m in a tunnel of baby-deadlines-more deadlines-caffeine and focused on getting through the day, and getting enough done that I can get to sleep. Like it or not, good for me or not, there isn’t a lot of mental space left to think about or process anything related to illness, even when its immediacy and urgency wakes me up at 3am.

So, I thought about the stories and thoughts that have inspired me this week, the things that make me stop and pause as a writer, a professor, a mother, a citizen, and, yes, a patient, too. I’m not in the doldrums of illness, but I am definitely in a place where a few good reminders about perspective, trust, curiosity, and discovery are nourishing.

–Have you read the eulogy for Steve Jobs written by his sister? It’s a rich, personable portrait of a man whose vision is a force in many our lives, and it’s also a beautiful look at love, creativity, and passion. His last words were, “Oh wow. Oh wow. Oh wow.” Pretty powerful.

–As the owner of two rescue dogs with sad pasts, I am always moved by stories of redemption and hope. I cam across this emotional article about abuse, trauma, trust, and resiliency for both a dog and her owner. While the animal’s abuse haunts me, the way both have been able to re-build their lives and trust unconditionally are truly inspirational to me. Living in the moment and letting go of pain, frustration, anger, and doubt are never easy, but this really brings to light what is possible when we do.

–I have always felt pretty fortunate to teach the classes I do (writing in the health sciences). My students have been and are passionate about their future careers as health care providers, are they are intellectually curious and engaged, and as a professor and a patient, they me feel just that much more hopeful about the future. Patients would be lucky to have some of these students as their doctors, nurses, pharmacists, and PTs. Every semester, reading their research papers and seeing the inspired issues they delve into makes me appreciate this more.

–Watching this little girl of mine grow from a baby into a walking-talking-signing-laughing-teasing-bike-riding toddler is, quite simply, amazing. No matter what else is going on in my day, in my body, in the world in general, watching her develop, experience new things, and approach life with an independent, open spirit is the essence of inspiring. Every day is a new opportunity to learn, to grow, and to build on what was already there, and that’s a lesson that helps everyone, I think.

Who Would I Be Without Illness?

For this week’s Patients For a Moment, founder Duncan Cross asks the question,

Who would you be without your illness?

He goes on to write, There’s a lot of emphasis in our community about staying positive, looking towards the future, optimism, et cetera – all of which has merit. But too much deliberate cheeriness denies us the ability to think and talk about what we’ve lost to our illnesses. We lose our ability to grieve for the person we wished to be, which seems to me an important part of adjusting to our circumstances. So the topic this time is that person, and how they would better, worse, or simply different than the person you are now?

Duncan Cross is one of the best patient bloggers on the Internet, in my humble opinion, and I’m glad he’s probing all of us like this because I too am bothered by the tendency to sugarcoat realities of illness among silver linings or attach maudlin sentiments to what can be demanding, painful circumstances.

I’ve mulled this question over several times the past few days. Indirectly, like in this post on illness and personality, I’ve touched on this question before.

Who would I be without illness?

When you’ve been sick your entire life, that becomes a much harder question to answer. I can’t mourn the “before” I never had, and I don’t spend much time speculating on the person I could have been otherwise because I am busy being and surviving. Illness has always been there, one of the few constants that remained predictable only in its unpredictability despite the many other changes in my life: high school, college, graduate school, career, marriage.

While I am at a point where illness is not the defining characteristic of my life, (and I know this because pushing back against or despite illness is no longer the main motivating force behind most of my decisions) clearly it is still present in nearly all of my choices and compromises.

It is impossible to pull illness out of the many threads that combine to make up the past thirty years, to take it away and see what would remain.

Certainly I can look at the accumulated losses over the years and see what could have been in those moments: all the birthdays, showers, holidays, vacations, weekend plans, family gatherings, and months of school I’ve missed over the years, all the disappointments that had me crying into my pillow as teenager and keep me awake at night as an adult.

There are definitely times when I wish those basic rights of passage that we often associate with living a “normal” life didn’t have to be so hard: What would it have been like to graduate from college with the same good GPA without having to study for tests in the ICU, or graduate from high school without a full year and half of it taken away from me, a blur of missed opportunities and make-up work?

What would it be like to live a life that wasn’t always in a state of catching up?

Or, what would it have been like to marry my husband without the “in sickness and in health” part of the vows already such an obvious and omnipresent part of our relationship? What would it feel like to dream about a future family with him without having to weigh so many competing risks and priorities, to be able to speak confidently in the language of “when” and not “if”?

And yet…

I know, here’s where you’re half-expecting, half-cringing, thinking I am going to say but it’s all been worth it and I’ve learned so much and I am a stronger person for it.

Don’t worry, didn’t I say earlier I don’t like a saccharine gloss applied to illness?

I don’t. Of course it would be nice to not have to fight so hard just to get to the starting line all the time. Of course I’ve had my fair share of anger and frustration and grief over that, and of course I realize that with progressive diseases those frustrations will grow more complicated.

That’s life. That’s the only life I’ve known and it’s the same life I grew up seeing for other family members.

There are some things I do know. For example, I’ve made a lot of negotiations in my career to accommodate illness and I know I might have made different choices if I were healthy, but I also know that no matter what else I might be doing, I would still be a writer. I would still have strong relationships with wonderful people, and who knows what other life obstacles would test our relationships besides illness.

I would still be a stubborn pain in the neck.

The thing is, I do not have regrets. I am proud of what I’ve been able to do and for me, to wish for what might have been, to wish for some hypothetical, abstract notion of “healthy,” chips away at what I have done.

For thirty years I have lived my life in extremes, and in the brief periods where things are stable I catch glimpses of what it would be like to live somewhere closer to the middle. So maybe that would be me minus illness, someone less extreme? But that could also mean someone with less determination or, as my husband says about me when I am exasperating, someone less feisty.

And I don’t know that I would want to make that compromise. My biggest strengths are indeed my biggest weaknesses and while illness may amplify those, I don’t think I’d want to be me without them.

Give and Take

Selena at Oh My Aches and Pains is hosting the next edition of Patients For A Moment, the patient blog carnival.

In the spirit of Valentine’s Day and all things related to love, she posed the following question:

Love? Hate? What are the four letter words you use to describe your life with chronic illness?

I’ve been thinking a lot about those two words, love and hate, and how they figure into my perspective. After careful consideration, I don’t think either of them are the four-letter words I’d choose to describe my life with chronic illness.

Certainly, they are a part of my life. I’m not trying to pretend otherwise.

For instance, I don’t like when I have to miss things or cancel much-anticipated plans or let people down when I am sick. I dislike how overwhelmed I get when things are acute and work and frustration and guilt pile up, and I cannot take anything for granted, including the small things healthy people wouldn’t have to worry about. I don’t like that my first intact childhood memory is from a surgery when I was a toddler, and that I can mark many holidays depending on which hospital I was in and for how long.

But even in the moments when all the varied losses seem like more, they are usually smaller grievances. Hate is too strong a word. Or perhaps there is enough resignation (or experience?) built in after three decades that it does not need to escalate to that point.

I love that despite illness I am doing many things I am passionate about and have created a life that is (too) full. I am fortunate to have found somewhat of a balance between what I need to do for my body and what I need to do for my mind.

I love that after 29 years of surgeries, infections, and setbacks I am in a relatively good groove with the best doctors available to manage my definitive diagnoses. I love that after 23 years of near-constant high-dose steroid therapy I have a break, and the highs and lows are much smoother.

I love that I am married to a person who sees me as a whole person and not a constellation of symptoms, whose compassion and selflessness is intuitive and instinctive.

I love that there are people who know me as a relative or friend, a writer or editor, a professor or consultant, but don’t automatically think of me as “sick.”

And I appreciate that when things are tough and crises occur, they do think of me as sick and understand my situation enough to know homeostasis will return at some point.

So if I had to pick other four-letter words to describe life with illness, mine would “give” and “take.” Illness takes away little pieces of the identity I’ve worked hard to build and I push back and reclaim them. Illness makes demands on me and those in my life and we acquiesce when it is prudent to, and move forward despite those demands we can.

I am no Pollyanna and I won’t pretend that I wouldn’t love to be healthy. But, I love that I do not have to hate my illnesses…that would be giving them too much.

Health Care Reform: Is the Timing Right?

A few months ago, I wrote about the economic impact of a health care system run amok, calling it the “other crisis.” When we’re too sick to participate in the workforce, when our employers can’t keep up with skyrocketing costs, when preventable diseases go unchecked and result in costly complications, we all pay the price.

Now, with the recession dominating headlines and the widely circulated fear that health care reform will take a backseat to the economy, it’s easy to dismiss the urgency for significant reform.

Yet I’d argue the stakes are greater than ever, and that now is the time—economic health is inextricably linked to our ability to access and maintain appropriate medical care. I believe this in terms of existing chronic illness, of course, but that’s just one part of it.

Why do I write this today? Because today was the first in a year-long series of “Summit Conversations” sponsored by the America’s Agenda Health Care Education Fund. These consensus-building talks bring together a diverse group of entities—politicians, policy-makers, labor unions, big Pharma. Very rarely do we see these groups united under a common goal.

The January 28th Summit talk was held at the University of Miami and hosted by President Donna Shalala. In a recent Miami Herald op-ed, Dr. Shalala wrote,

“The Summit Conversations commence at an opportune time. Recent polls show three-quarters of Americans expect major healthcare reform legislation to be passed in President Barack Obama’s first term. Democratic leaders in Congress are reaching across the aisle for bipartisan support, and there are promising responses from business and labor.”

Let’s hope she is right, that this is the right time for the right groups of people to come together, build consensus about reform, and turn that consensus into change.

In so many ways, we can’t afford for that not to happen.

In other news, be sure to check out some of the medical blogosphere’s best this week: a fantastic Grand Rounds is up at ChronicBabe, and this month’s pain-blog carnival is up at How To Cope With Pain.

Mid-Week Resources

Looking to dig into some good chronic illness resources to get you to the weekend? The July Pain-Blog carnival is now up at How To Cope With Pain, and remember, new bloggers are always welcome to contribute their best posts at the end of each month.

Also, Leslie at Getting Closer to Myself has a call for submissions about living with chronic illness as a younger woman. As the author of a new book all about chronic illness in your twenties and thirties, I’m thrilled to see growing attention towards this phenomenon.

Interviews, Inspiration, and Links

I am used to being the one conducting interviews, so I was anxious to see how my Author Q&A with Library Journal went. Check it out here.

Since we’re (somewhat) on the topic of writing, I read a great essay in the Chronicle of Higher Education. It discusses the process that results in published work, a process that, from the outside, may not appear as arduous and productive as it really is:

“What does it look like to do intellectual work? What does it look like to have an insight? To formulate a theory? To solve a philosophical problem? What does it take to get to the point at which you’re ready to sit down and write something, ready to present something to the world?

Experience tells me that sometimes it looks like playing Spider Solitaire. Or twirling one’s hair, talking to oneself, or sitting stock still and staring into space…

…We go through the motions that have led us, in the past, to cerebral success. We can no more force ourselves to make an intellectual breakthrough than we can will ourselves to sleep. All we can do is prepare the environment and perform the rituals associated with thinking.”

For anyone logging long hours doing work that isn’t always visible in conventional ways, be sure to read it. Or pass it on to the next person who asks you, “So what do you do all day?”

So I’m a day late posting, but here’s hoping the expanded edition of the May Pain-Blog Carnival will give you some good weekend reading. The best posts of the month are featured, and new bloggers are always welcome to participate.

April’s Best…

A quick note to say the April Pain-Blog carnival is up here, featuring the month’s best posts.

Also, starting next Monday, HowToCopewithPain will be hosting Monday Chats, which are real-time moderated discussions from 12-1, and frequently-moderated the rest of Mondays. Stop by to join the discussion. This Monday’s topic: What’s your biggest challenge and how to you deal with it?

Speaking of contributing, check out the details of the 2nd Annual DiabetesMine Design Challenge, “a competition designed to foster innovation in diabetes design and encourage creative new tools that will improve life with diabetes.”