Category Archives: PFAM

Making Order Out of Chaos

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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?

How We Roll: Travel and Chronic Illness

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For the next edition of Patients for a Moment, Duncan Cross asks how we roll with chronic illness. Since I’ve made two fairly long car trips in the past couple months, travel is a timely topic for me.

When I read the prompt, I couldn’t help but pull up a post from the vault, this entry from July of 2006 that captured my most humiliating experience ever. Click on over for the gory details, but it involves airline inconsistency, public disclosure of personal health details, an insensitive bully, a whole lot of red-faced shouting, and The Vest, my expensive and unwieldy piece of medical equipment. Good times.

Aside from traveling to see family, we don’t really have a chance to travel much. In fact, a five-day trip this spring was the first real true vacation we’ve had in years. We haven’t had the time—and haven’t made the time, I suppose. But beyond that, I end up having to cancel things at the last minute often, which makes me hesitant to plan too far ahead. I end up paying a steep price whenever I do make a trip, even a short overnight for a conference or a meeting. Inevitably, I catch something from being on the airplane, and it takes weeks, sometimes months, to clear my system.

So, given that airline travel makes me sick, and my hesitancy to purchase the ever-expensive plane tickets too far in advance, when we do need to be somewhere, we’ve started driving. (Unless it is just too far and too short or a trip, or we find a great deal on tickets, and it’s not cold/flu season, etc.) We have family in Michigan, so years of 12-hour drives have helped condition me. We can control how long we’re on the road, we can stop if we need to, and we honestly, we really love the chance to just chat. Sometimes we’re several states in before we even turn on the music.

By now, we know which rest areas have viable food options for me, as gluten-free food is tough to find on the road. We know which hotels take dogs, which routes have the best views, and the best spots to fill up on gas.

I’ve learned to keep my “regular” meds in my purse in the front so I can reach them easily. We pack tons of water and low-sugar drinks, and I’ve started bring a cooler of healthy snacks—balanced nutrition bars, trail mix, yogurt, etc. That way, if the (scant) salad offerings are more meager than usual, I know I have something to eat that is gluten-free and has protein. I keep my brain fog in mind when we divvy up the driving.

(And for the toddler? Lots of books, snacks, and a mini DVD player she watches Baby Signing Time and Sesame Street on. She can turn it on and off, rewind/fast forward, and change the volume on her own, which makes the process pretty painless. So far, we’ve been really luck she rolls so easily and without complaint.)

Of course I do fly and take the train at times, but taking travel into my own terms (and staying healthier for it) has made a big difference.

On Why I Write

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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.

On Inspiration

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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.