Friday, May 30, 2008

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.

Tuesday, May 27, 2008

What Remains...

“Your life will become about your relationships.”

An incredibly wise woman I know relayed the preceding sentence to me once during an interview. We were discussing employment and illness, and it was something someone said to her when she was grieving the loss of her professional life and career.

Your life will become about your relationships.

What that means, of course, is that your life will be defined by the bonds you make with other people, not by titles or promotions. That your life’s richness will be assessed by the lives you touch, the love you give and receive, not the paycheck you bring in or the billable hours you accrue.

It’s a simple sentence, really, but a reality check indeed.

This sentence has been on my mind a lot these days, for reasons that reach far beyond questions of employment and career aspirations. The life of someone I had the privilege to know ended far too quickly, far too awfully. I can’t begin to imagine the loss her friends and family are experiencing, and I won’t attempt to try. Sometimes it’s just not your story to tell.

But what I do think is appropriate to mention is just how many people mourn her, how many people miss her smile, remember her warmth, claim to have been touched personally by her upbeat attitude.

Such was a life lived about relationships, for relationships. In terms of life and death, it doesn’t get clearer than that.

In so many smaller ways, this sentiment is a reminder for everyone, healthy or chronically ill. There are losses and setbacks, disappointments and diagnoses. We miss events and cancel plans, and things just don’t go according to plan. We resign from jobs or switch paths, and it isn’t always what we want…

But if we work towards living a life that is about the people in it, then much remains.

Thursday, May 22, 2008

Education, Disrupted

This is how this post should have started:

“Today I participated in the fourth annual symposium on chronic illness and postsecondary education at DePaul University’s
Chronic Illness Initiative

Instead, this is the real beginning:

Today I was supposed to be in Chicago speaking at the fourth annual symposium on chronic illness and postsecondary education at DePaul University’s Chronic Illness Initiative.

Instead, I’m lying prone on the couch and various illness paraphernalia surrounds me. I’m somewhat confident I’ve skirted a hospitalization, but still wary of the possibility.

Um, yes. The speaker who was supposed to train faculty on handling students with chronic illness and offer strategies to chronically ill college students is a no-show because she came down with a particularly vicious respiratory infection. My life is nothing if not dependably ironic, no?

I don’t have enough lung capacity to do public speaking right now, but I can type. So instead of the presentations I planned to deliver, let’s see if this disruption can yield something of value anyway.

First off, the
Chronic Illness Initiative
(CII) at DePaul is a truly amazing program. I first learned of it when researching a chapter in my book and was so impressed with the scope and mission of the program. In summary, it allows chronically ill students to get their degree at their own pace. It also serves as a liaison between students and faculty; educates faculty and staff about chronic illness; and assists students in planning viable schedules, among many other vital services.

Why is the CII so forward-thinking and necessary? Like the workplace, academia is not always equipped to handle the particular challenges of chronic illness. In the classroom, these challenges include prolonged absences, seasonal fluctuations in illness, unpredictable illness flares, etc.

Sometimes, students are lumped in with offices that cater to students with learning disabilities or physical disabilities, populations with very different needs than those of students with “invisible” chronic illnesses. In other places, students and instructors are left to devise ad hoc policies on their own which is also problematic, especially if the particular manifestations of a student’s illness are not understood.

I spent fours years in the trenches trying to balance serious chronic illness with a challenging college course load and GPA worries. I had faculty and administrators who learned with me and worked with me, and I made it through. I know firsthand how important disease education, communication, and accountability are to this dynamic, and I know that if you advocate for your education you can succeed without jeopardizing your health.

But I also know not every student has such good experiences. And I know that it doesn’t need to be as hard as it is for so many, or even as hard as it was for me. That’s where the CII and the learning objectives of this year’s symposium come in—from the benefits of forming a coalition between medical professionals and administrators to understanding the disabling nature of fatigue to identifying the problems students face when transitioning to independent care of their conditions, this year’s meeting promises to cover many timely and necessary issues.

The mission and goals of the CII are hopefully ones that in time will be replicated on college campuses throughout the country. Until there are more universal policies regarding issues like illness disclosure, absences due to chronic illness, or flexibility with course load and pacing, chronic illness will pose a greater obstacle to higher education than it needs to be.

I wish I was there soaking it all up and learning from my colleagues and from the students. But I’m trying to roll with it and accept the unpredictability of chronic illness, something the students of the CII know doesn’t defer to tests or deadlines—or, in my case, a symposium, either.

Monday, May 12, 2008

Chronic Pain: Class and Cost Distinctions

As I sat icing my hips today—I knew my beloved elliptical machine was bad for the hips, but wasn’t expecting the stationary bike to be so tortuous—I recalled an interesting Time article about chronic pain I read last week.

That chronic pain is both exhaustive in reach and hugely expensive certainly isn’t news. Still, some of the statistics the article highlights are sobering:

--More than one quarter of Americans suffer from chronic pain
--Each year, chronic pain costs us $60 billion in lost productivity
--In 2004, Americans spent a whopping $2.6 billion on OTC pain medications

Even more compelling are the recent finding from the Lancet that explore chronic pain and its class implications. The Time article goes on to report that:

“Americans in households making less than $30,000 a year spend nearly 20% of their lives in moderate to severe pain, compared with less than 8% of people in households earning above $100,000.”

Other points of interest? The difference extends to the nature of pain itself. People on the affluent side of the economic split often experienced pain from activities like exercising; people on the other end of the spectrum experienced pain as a result of the physical labor and repetitive movements intrinsic to blue-collar jobs.

What’s positive here is that with better preventative policies in the workplace some of this pain can be managed. But coupled with another study’s finding that those who live in poorer ZIP codes have less access to pain medication because their local drug stores don’t stock enough of it, the picture isn’t as clean.

Anyway, be sure to click on over and read the whole article--I've highlighted what was most interesting to me, but there's more to it, especially information on gender that isn't what we usually hear.

Obviously the scope of pain goes far beyond exercise and physically demanding jobs—from migraines to arthritis to a whole host of conditions, there are plenty of reasons people are in pain, miss work, socialize less. I know for me, the tendonitis in my hips is a source of pain less frequently than pain in my lungs or joints from other conditions. Often these sources cut across class and economic boundaries, but until the gap in access to resources closes, a divide remains.

On a somewhat related note, I was quoted in a USA Today column on spirit-boosting tips when you’re dealing with illness or pain. Check it out--hopefully, some of the patient experience collected there cuts across class and economic boundaries,too.

Tuesday, May 06, 2008

On Food, Cost, and Cabbage--A Gluten-Free Solution for What Ails Us

Several things were swirling around in my head as I decided on this post:

1. My recent entry on the incidental expenses of illness
2. Worldwide strife over food prices and shortages
3. Around the world, May is celiac awareness month

Buying and cooking gluten-free food has always required more creativity, effort, and expense (all well worth it, obviously) but when the price of staples like milk, eggs, and flour make headline news, the gluten-free budget isn’t headed anywhere good either.

Two other things should be noted for their particular relevance to this post:

1. In addition to being dairy and gluten-free, I have the singular focus of an old lady when it comes to nutrition. Fiber? Can’t get enough of it. In fact, if my lunch and dinner don’t revolve around something green, I get a bit twitchy. And sodium? I’m as tenacious about cutting out extra salt as I am about incorporating fiber. I’d like to say it’s because I’m that dedicated to good health, but really I also just hate the way my rings get tight when I eat salty food. (My husband survives this regime by keeping a shaker of salt and a container of parmesan cheese at hand, but let me assure what I lack in salt I make up for with garlic and herbs).

2. I’m mildly obsessed with the culinary drama (more drama than culinary, sometimes) called Top Chef. Last week’s challenge involved cooking a healthy, inexpensive, and easy family meal. Now, I was all about Nikki’s one-pan chicken and veg extravaganza, but some of those recipes looked way too persnickety for a truly easy family meal. I mean, I love to cook and I don’t even have children yet and I think on the average Wednesday night when I want something easy (so, you know, I can go watch Top Chef) I’d lose patience.

So, let’s recap—food is expensive, gluten-free meals even more so, and time and convenience are at a premium. I now humbly submit my entry for an easy, inexpensive, gluten-free meal: Lazyman’s cabbage rolls, an homage to my husband’s Midwestern casserole-rich upbringing. His mother gave us her recipe and we added a few twists. It only takes about 10 minutes to prepare and while it does need to bake, it is a great dish to make ahead of time (let it bake while you watch late-night TV shows) and re-heats really well.

The short version: brown some ground turkey in a pan, add some rice and a large can of (no-salt added) diced tomatoes and one cup of water in with it, then dump the mixture in a baking dish and smother it with 4 cups of shredded cabbage. You can split the cabbage in half and layer the tomato mixture in the middle. Leave it alone for an hour and a half at 425 degrees and then you have a meal plus leftovers. You can use beef, of course. We just like turkey. We use 3 tablespoons of risotto, but regular rice works the same. Few ingredients, less cost, and it’s low in sodium and high in fiber. What’s not to love?

Like any good casserole-inspired dish it looks messy but tastes great:

Before I send you off to the grocery store, two quick updates: Grand Rounds is up at Suture for a Living, so definitely check it out.

Last but not least, the kind editors at Publisher’s Weekly gave Life Disrupted a really great review in their May 5 issue. Click here to read it online!!!
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